Examining Models of Dementia Care: Final Report

• Recognize signs of possible cognitive impairment (5, 8, 12, 14, 17, 18, 27, 32, 33) and communicate observation with the person and others as appropriate (3, 14, 27).
• Perform a brief cognitive test when a change is observed or individual or family member or other informant reports cognitive changes (4, 5, 8, 14, 17, 18, 27, 33, 37).
• Use of brief cognitive tests to identify cognitive impairment in asymptomatic persons should not be undertaken (8, 17, 27).
• Consider the effects of low education, communication difficulties, cultural factors, low literacy, and sensory impairments such as hearing loss or visual acuity on inter-rater reliability of screening (6, 8).

• Conduct a comprehensive evaluation that includes a clear history of onset and progression of symptoms (8, 12, 14, 16, 18, 27, 30, 32, 36), an interview with individual and reliable informants (when available) (6, 8, 11 12, 14, 16, 30), a complete physical and neurological exam (12, 14, 16, 18, 22, 30, 32, 36), review of medications and other substances for adverse effects and comorbid medical and psychiatric conditions that may mimic or exacerbate dementia (8, 11, 12, 14, 18, 27, 30, 32, 36), a formal assessment of multiple cognitive domains using a validated instrument or neuropsychological testing (6, 11, 12, 14, 16, 22, 27, 30, 32, 36), assessment of ADLs (12, 14, 22, 30), brain imaging (12, 14, 16, 22, 36), and standard laboratory tests for possible reversible causes of dementia (12, 14, 16, 22, 30, 32, 36).
• Consider consultation with neurologist or geriatric psychiatrist if there is diagnostic uncertainty or atypical features, the person is under 65 years of age, or there are other complicating factors (5, 8, 11, 17, 18, 25, 32).
• Consult with other disciplines on the team to access full range of information to inform final diagnosis (6, 35).
• Know feasible, ethical options for obtaining consent from the person with dementia (6) and obtain corroboration from knowledgeable informants (6, 8).
• Communicate the diagnosis with the person and family members in a clear and compassionate manner that is consistent with their expressed wishes, values, preferences, culture, educational level, and abilities (10, 27, 37).

• Use specifically designed instruments to systematically assess changes in behavioral and psychological symptoms, cognition, and function (10, 13, 14, 16, 19, 33).
• Distinguish dementia from depression or delirium. (17, 19, 27, 29, 30, 33).
• Assess the person's decision making capacity and determine whether a surrogate has been identified (10).
• Engage the person with dementia in the assessment process and family members or others who can provide collateral information, if available (1, 10, 14, 19, 30).
• Monitor for the presence of behavioral and psychological symptoms of dementia, which may indicate distress from medical, psychiatric, environmental, and social factors (2, 3, 7, 15, 19, 29, 36, 37).
• Monitor for signs of neglect or abuse, such as repeated hospitalizations, multiple falls, dehydration, malnutrition, wandering from home, and medication misuse. For community-based individuals, monitor for indications that the person can no longer live alone (30).

• Involve the person, proxy decision makers, family members, and care providers in the care planning process (1, 2, 3, 7, 10).
• Address quality of life by building on the person's abilities, ensuring that adequate supports are in place, and encouraging meaningful engagement in activities and socialization (1, 3, 5, 7, 15, 18, 23, 27, 30, 35).
• Adapt to what can be reasonably accomplished by understanding the person's history, living situation, caregiver support, resource availability, preferences, and daily routine/patterns (3, 9, 15, 23, 27, 30).
• Monitor and update care plan regularly as the person's needs, abilities, and wishes change (1, 2, 3, 5, 7, 11, 17, 18, 23, 35, 37).

• Identify and treat all comorbid conditions such as diabetes, congestive heart failure, and chronic obstructive pulmonary disease in the context of dementia (10, 11, 17, 22, 23, 25, 26, 30, 37).
• Identify and treat vascular risk factors including risk for cerebrovascular events (7, 11, 12, 16).
• Use nonpharmacologic and pharmacologic approaches to manage cognitive and behavioral problems in dementia (4, 7, 8, 11, 17, 22, 27, 30, 34, 37).
• Simplify daily medication regimen as much as possible. Minimize number of medications (3, 8, 24, 25, 37), adjust schedule so caregiver is available to help (3, 37), monitor closely for potential side effects, review medication regimen regularly (3, 7, 8, 17, 23, 24, 25, 30, 33, 37), monitor for potential problems with over-the-counter medications (3), and document response to therapy (3, 33).
• Advise about the potential benefits and risks of prescription medications for Alzheimer's disease and other dementias, and, if prescription medications are chosen, educate individuals and caregivers about use to improve adherence and clinical outcomes (7, 30).
• Ease distress from symptoms, pain, and stress and maximize quality of life (1, 3, 4, 7, 10, 13, 24, 27, 32, 37).
• Make early and regular use of specialized services. Refer to other providers for diagnostic consultation, rehabilitation evaluation and treatment, treatment of psychiatric disorders, pain management/palliative care, nutritional status, sensory function and social services (8, 37).

• Educate the person with dementia and their family about the symptoms of dementia, course and prognosis, treatments, local care and support services, support groups, government benefits, local information sources, and legal and financial options (3, 5, 10, 11, 17, 20, 27, 29, 37).
• Promote decision making in a manner consistent with the values, preferences, culture, educational level, and abilities of the person with dementia (3, 10, 24).
• Seek valid consent from the person with dementia by informing the person of options, checking that he or she understands care options, that the person is not coerced regarding the decision, and monitor ability to provide consent over time (27, 37). Proxy decision makers should be involved if a person lacks decision making capacity and proxy decision makers must represent the person's prior attitudes and values (33, 37).
• Discuss possible safety concerns such as driving ability and reassess abilities over time (11, 22, 27, 29, 30, 36, 37). Reassessment of ability to drive should occur at least every 6-12 months (37).
• Address intensity of care and end-of-life decisions with the person who has dementia and his or her caregiver and (1, 2, 3, 5, 10, 17, 24) document person's wishes (5, 29).

• Encourage participation by asking the person directly about his or her symptoms and preferences regardless of level of cognitive ability (1, 2, 3, 6, 7, 18, 19, 21, 30, 33, 35).
• Recognize and support the person's selfhood throughout the course of his or her dementia (15). Balance the person's need for protection from harmful consequences against the person's fundamental rights to autonomy, dignity, choice, and self-determination (3, 16, 42).
• Provide emotional support, reassurance, and counseling as needed and appropriate, as the person addresses issues of loss and other difficulties associated with dementia (3, 14, 23, 25, 27, 30, 33).

• Provide assistance, as needed, with basic and IADLs, including eating, bathing, dressing, elimination, movement, shopping, managing medications and pain control (1, 3, 4, 5, 15, 17, 30, 34, 35, 37). Ensure that basic needs, such as adequate nutrition, hydration, and sleep, are met.
  • Use strategies such as task breakdown to help persons with dementia complete their daily activities (1).
  • Support consistency and routines to maintain abilities and reduce anxiety and stress (1, 3, 15, 35).
  • Anticipate changes and plan ahead to provide care that meets the person's needs (2, 3, 9).
  • Use vision, hearing, and other sensory aids to support health-related and personal care activities (4, 37).
  • Make the person as comfortable as possible (2, 3, 9).
  • Avoid burdensome, nonbeneficial treatments (e.g., tube feeding) (17).
  • Use individualized, culturally sensitive care approaches that reflect the needs and preferences of the person with dementia, build on the person's retained abilities, and maximize his or her participation in care (1, 2, 3, 15, 17, 33, 35, 37). Do not "do for" a person who can perform an activity or part of the activity independently (1).
• Use individualized care approaches to address cognitive, physical, social, and spiritual needs and increase quality of life.
  • Offer regular cognitive stimulation (11) and foster orientation (4, 37).
  • Provide regular physical activity and exercise to maintain strength and support physical functioning (3, 11, 15, 17, 37).
  • Support social relationships and social functioning and provide a sense of community, while respecting the preferences of individuals who prefers solitude (1, 3, 11, 15).
• Provide and encourage participation in activities that are pleasant, enjoyable, and personally meaningful (1, 3, 15).
• Consider the special needs of persons with dementia who are alone or isolated (3, 37). If needed, use technologies to monitor and communicate with persons with dementia who are alone (17).

• Recognize the critical role and importance of the caregiver-care recipient dyad in dementia care (3, 11, 30).
• Identify primary caregiver or decision making surrogate (10, 23).
• Assess caregiver willingness and capacity to provide care, level of involvement, geographic proximity, overall health, and legal and financial concerns (3, 10, 17, 30).
• Monitor caregiver strain or stress (3, 10, 16, 17, 27, 30).
• Identify caregiver needs and offer education, support, and services throughout the entire course of the illness (23, 27, 32, 33, 34, 36, 37).

• Provide encouragement and reassurance for the family caregiver(s) (2, 4, 11, 14, 17, 37).
• Provide family caregiver education and training to help caregivers develop skills to manage caregiving tasks (4, 17, 37).
• Provide family caregivers who experience caregiving-related distress and negative psychological effects with counseling and treatments to reduce these negative effects and improve caregiver well-being (2, 15, 27, 31, 37).
• Provide access to a comprehensive range of respite services and caregiving-related transportation (3, 27).
• Encourage or assist in recruiting other family members, friends, and members of the caregiver's social network to help with caregiving tasks (17, 35, 37).

• Identify the causes of behavioral and psychiatric symptoms.
  • Talk with family and other paid and unpaid caregivers to identify the causes of behavioral and psychological symptoms (27).
  • Consider possible causes, such as physical illness, pain, emotional distress, pain, insecurity, lack of privacy, boredom, difficulty communicating, medications, sleep disturbance, delirium, or conflict between the person with dementia and family or other unpaid or paid caregivers (5, 7, 15, 17, 22, 25, 27). Dementia-related neurochemical changes in the brain can also cause the symptoms (7).
  • Consider that behavioral and psychological symptoms may be a form of communication for persons who lack the ability to communicate any other way (1, 3, 15).
• Plan approaches to address selected symptom(s). Do not assume that the same treatment(s) is appropriate for the wide array of behavioral and psychological symptoms (7, 17, 27, 30).
  • When selecting symptoms and approaches, consider the safety and well-being of the person with dementia, family and other paid and unpaid caregivers, and others in the person's environment (37).
  • Document the selected symptom(s), identified causes, and planned approaches (27).
• Use nonpharmacological approaches first.
  • Use individualized approaches such as simplification of tasks or the environment; avoidance of situations that agitate or frighten the person or create frustration; distraction; music, pleasant activities; multisensory therapy; and massage and touch therapy (1, 10, 15, 17, 22, 25, 32, 34, 37).
  • Use community-based programs such as adult day care and support groups that focus on management of behavioral and psychological symptoms. Provide training for family caregivers to help them understand and manage the symptoms (3, 37).
  • Because people may respond better to 1 treatment than another, monitor each approach and adapt the care plan accordingly (27).
• If nonpharmacological approaches are unsuccessful, consider medications to manage behavioral and psychological symptoms.
  • Consider antidepressant medications if the person with dementia and depression has not responded to nonpharmacological approaches (25, 36, 37).
  • Consider antipsychotic medications for severe agitation, aggression, and psychosis, weighing the serious possible side effects of antipsychotics against the potential of persons with agitation, aggression, or psychosis to harm themselves or others (1, 10, 25, 36, 37).
  • If antipsychotic medications are started, use the lowest possible dose; reassess the need for continued use frequently, and discontinue as soon as possible (16, 22, 27, 37).
  • Continue nonpharmacological approaches even when using antipsychotics, antidepressants, and other medications to manage behavioral and psychological symptoms (7, 30).
  • Monitor the person with dementia for negative medication effects, particularly if he or she is restrained or frail (27).
  • Document the proportion of persons with dementia who receive antipsychotic medications and try to reduce that proportion (28, 29).
• Avoid the use of physical restraints except in emergencies to prevent harm to self and others (1, 3, 4, 17, 33).
• Monitor and document the effectiveness of all nonpharmacological and pharmacological approaches and adjust approaches as needed (7).

• Provide information and guidance for the person with dementia and family caregiver(s) about safety and the need to modify the person's living environment to reduce risks, including falls. Assist in modifying the living environment to ensure safety, as needed, and be prepared to respond to unsafe wandering and other risky behaviors (1, 3, 11, 17, 29, 34).
• Assess and monitor driving ability and counsel the person with dementia and family caregiver(s) about the risks of driving, the likelihood that giving up driving is inevitable in progressive dementia, and alternatives to driving (11, 29, 36, 37).
• Monitor for evidence of elder abuse and neglect and report all suspicions of abuse to the appropriate authorities, as required by law (3, 10, 16).
• Respond promptly to indications of suicidal thoughts or intent to harm others (33).
• Counsel the person with dementia or the family caregiver(s) about the need for emergency preparedness, for example, to be ready for extreme weather or other emergencies. Assist the person and family caregiver in developing a plan and obtaining any needed supplies (3).
• Be sensitive to increased safety risks for people with dementia who live alone (3).

• Provide a physical environment that is comfortable and familiar (1, 9, 15). Accommodate adjustments in room temperatures, noise level, and lighting to increase comfort (3, 4, 9, 15, 34). In residential settings, incorporate objects from home to increase the familiarity of the physical environment (4).
• Provide a social environment that feels consistent and familiar. Involve family and friends and maintain consistency of paid and unpaid caregivers and caregiving routines (3, 4, 15, 17, 35).
• Use modifications in the physical and social environment to support optimal functioning, a sustained sense of self, mobility, independence, quality of life, and safety (1, 5, 15, 17, 34). For example, use environmental cues and monitoring systems to maximize independent movement and avoid unsafe wandering (1, 17). Provide easy, safe, and secure access to the outdoors (1). Install communication and monitoring technologies for persons with dementia who are alone (35).
• Offer opportunities for activity intended to support personal meaning, a sense of community, choices, and enjoyment (1, 15).
• Avoid both overstimulation that can cause agitation, increased confusion, and delirium and avoid understimulation that can cause sensory deprivation and withdrawal (15, 17, 33, 34).

• Assess the need for a transition by considering safety, health, care needs, and level of burden associated with the transition (3, 4, 13).
• Ensure timely transfer of information about the person's cognitive and function status and coordination and communication between the care settings (2, 13).
• Avoid transitions to a hospital unless it is clearly necessary to achieve the desired goals of care (20, 24).
• Involve the person with dementia (whenever possible) and the family caregiver in planning hospital discharge and ensure that they understand the discharge plan and care instructions (3).
• Following care transitions, perform medication reconciliation to ensure that all medications are current, necessary, and unlikely to cause adverse drug interactions (3).

• Refer the person with dementia and family caregiver(s) to sources of care and services that meet their identified needs, including:
  • Medical and health-related care and services (e.g., medication monitoring and reconciliation, specialized behavioral health services, occupational therapy, and hospice and palliative care (13, 17, 33, 35, 37).
  • Residential care (17).
  • Nonmedical in-home and community-based services (e.g., respite care, personal care, occupational therapy, support groups, adult day services, and legal and financial planning) (3, 10, 11, 17, 24, 34, 37).
• Connect the person with dementia and family caregiver(s) to agencies and providers who can help them identify their care and service needs, including changing needs over time. Help the person and family to navigate the health care system and locate, arrange, and coordinate needed care and services. Connect them, as appropriate, to organizations that represent specific causes of dementia, such as Alzheimer's disease, Lewy body disease, frontotemporal degeneration, and Parkinson's disease; the local Area Agency on Aging; and social workers, care managers or other providers who are knowledgeable about local resources, treatment centers, and payment sources (10, 17, 18, 30, 34, 37).
• Be sensitive to the special issues associated with early-onset dementia, particularly about loss of employment, insurance, disability benefits, pensions, and access to support services appropriate for that group (25).
• Consider and respond to the special issues in care and service connections for persons with dementia who live alone, particularly in emergency situations (3).

• Involve all the agencies and providers that are caring for the person with dementia, including physicians, nurses, social workers, psychologists, medical assistants, occupational therapists, physical therapists, speech and language pathologists, community service providers and agencies, and personal care aides who are working with the person (3, 16, 27, 34).
• Conduct joint care planning involving all relevant agencies and providers and agree jointly about policies and procedures (3, 16, 27).
• Work to have 1 health care or social service provider designated to facilitate collaboration and to oversee the development and implementation of the joint care plan (13, 34).
• Use a team approach to support collaboration among professionals and other providers who work in the same care organization (13).

Clark et al. (2004)

• For patients with average or greater than average memory difficulties, decrease in both hospital admission and emergency department visit
• Decrease in physician visits

Bass et al. (2003)

• Reduced caregiver depression
• Reduced caregiver relationship strain

Partners in Dementia Care--a version of BRI Care Consultation

Bass et al. (2015)

• Reduced relationship strain for less severely impaired veterans with dementia
• Reduced depression for less severely impaired veterans with dementia Reduced unmet needs for less severely impaired veterans with dementia

• Reduced emergency department visits for veterans who had more difficulties with behavioral symptoms
• Reduced fewer hospital admissions for some subgroups

• Reduced caregiver depression
• Increased caregiver use of support services
• Reduced caregiver unmet need

LaMantia et al. (2015)

• For participants in the home component, reduced dementia and depression symptoms
• For participant in the home component, reduced symptom burden

Callahan et al. (2006)

• Fewer behavioral and psychological symptoms of dementia
• Improvements in distress for person with dementia
• Caregivers showed improvement in depression

Samus et al. (2014)

• Delay in time to all-cause transition from home
• Decreased hazard of leaving the home
• Reduced unmet needs in safety and legal/advance care domains
• Improved self-reported quality of life

Easom et al. (2013)

• Reduced caregiver depression
• Reduced caregiver burden
• Improved caregiver health
• Reduced behavioral problems of care recipient

Nichols et al. (2008)

• Reduced number of hours caregivers provided care

Belle, et al. (2006)

• For Hispanic or Latino and White or Caucasian caregivers, improved quality of life
• For Black or African-American spouse caregivers, improved quality of life Reduced clinical depression among caregivers

• Attend morning exercise group at 10am and lunch at noon at Forest View Senior Center on Mondays, Wednesdays, and Fridays
• Participate in early-stage support group at Park Center the third Tuesday of the month at 1:30pm

• Register for upcoming workshop at the Alzheimer's Association located in Centerville on Behavioral Symptoms of Dementia
• Follow-up with Dr. Hollinger by calling 555-555-5555 this week about refilling mom's heart medication prescription Review bank statement and balance checkbook every month

• Mail home safety checklist to Mary (caregiver)
• Follow-up with the information about transportation options with Mary (caregiver)
• E-mail possible dates and times for a family meeting

• Mow lawn every Saturday and trim bushes
• Make soup and deliver on Tuesday, June 21
• Walk the dog on Mondays, Wednesdays, and Fridays at noon when Betty is at the senior center

1. Promote personal comfort at all times.
2. Incorporate the person's life story into his or her care plan.
3. Create a personalized homelike environment.
4. Anticipate the person's needs rather than respond primarily to discomfort or behaviors.
5. Empower caregivers to do whatever is needed to make the person comfortable.

• Direct care providers need training not only to recognize the signs of early dementia but also to understand when and how to communicate changes to supervisors, discuss observations with the home care team, or consult with an external expert.
• Families can also benefit from education about the warning signs. Family caregivers who witness signs of dementia should be referred to a physician or other qualified practitioner.

• Validated screening tools will be used to identify patients presenting with dementia and delirium.
• An assessment for dementia should be conducted after delirium screening.

• Review available information about the patient's recent or past physical, functional, cognitive, and behavioral status. Look for previous diagnoses in which dementia is a key symptom.
• Check current medical orders for medications that can alter cognitive function (e.g., antiarrhythmics, opioids, hypnotics, psychotropics, sedatives, medications with significant anticholinergic properties). Also ask about the use of over-the-counter medications or herbal preparations that may affect cognitive function.
• Search for evidence of specific impairments or symptoms (e.g., neurological or behavior symptoms) that may suggest underlying dementia.
• Professional staff should observe the patient's current physical, functional, and psychosocial status.

• Psychologists conducting evaluations of dementia and age-related cognitive change:
  • Are aware of and attempt to reduce or eliminate the effects of cultural perspectives, personal and societal biases, and tests that are inappropriate for an individual on the diagnostic evaluation.

• Do not screen asymptomatic population for cognitive impairment.
• Suspect cognitive impairment when there is functional decline and work in usual activities.
• Communication difficulties, cultural factors, low education and literacy impact formal cognitive screening, with poor inter-rater reliability. Use interpreter services to assist in more accurate patient screening and assessment.

• Medical intervention aimed at early detection and prevention of dementia should be implemented as a 5 year delay in the onset of dementia is known to cut the prevalence by half.
• Periodic and continuous medical intervention alert to any changes in the cognitive function in the ADLs performance should be implemented in patients with suspected mild cognitive impairment.

• Detection of cognitive impairment is a stepwise, iterative process.
• Informal observation alone by a physician is not sufficient without a specific cognitive evaluation.
• Detection of cognitive impairment can be enhanced by specifically asking about changes in memory, language, and the ability to complete routine tasks.
• Although no single tool is recognized as the "gold standard" for detection of cognitive impairment, and initial structured assessment should provide either a baseline for cognitive surveillance or a trigger for further evaluation.
• Clinical staff can offer valuable observations of cognitive and functional changes in patients who are seen over time.
• Informants (family member, caregiver, etc.) can provide valuable information about the presence of a change in cognition.

• No formal recommendations for cognitive screening are indicated in asymptomatic individuals. Clinicians are advised to be alert for cognitive and functional decline in older adults to detect dementia and dementia-like presentation in early stages.

• PCPs should routinely ask Medicare beneficiaries about any changes in memory or cognition; they should use their clinical judgment and observational skills to determine whether such changes have occurred.
• PCPs should use the Medicare Annual Wellness Visit as an opportunity to initiate and continue a discussion with beneficiaries and families about memory-related signs and symptoms.
• The workgroup did not endorse the use of any specific risk factors for dementia (e.g., attainment of any specific age that would automatically trigger a conversation about cognition).
• When falls and gait disorders occur in in primary care patients, PCPs could use these events to trigger for a conversion about cognition.
• PCPs should routinely use an evidence-based assessment tool to detect cognitive impairment in 3 groups of Medicare beneficiaries: (1) those who report concerns about their memory or cognition; (2) those whose family members, friends, or other caregivers report concerns about the beneficiary's memory or cognition; and (3) those with observable clinical signs and symptoms of cognitive impairment.
• PCPs should document in the person's medical record the results of the assessment process and the assessment tool used.
• PCPs could use 1 of the 12 assessment tools identified by an NIA working group and an Alzheimer's Association working group.

• Memory assessment services (which may be provided by a memory assessment clinic or by community mental health teams) should be the single point of referral for all people with a possible diagnosis of dementia.
• Primary health care staff should consider referring people who show signs of mild cognitive impairment for assessment by memory assessment services to aid early identification of dementia, because more than 50% of people with mild cognitive impairment later developed dementia.
• A basic dementia screen should be performed at the time of presentation, usually within primary care.

• The general practitioner knows the cognitive behavioral profile of his/her patients and can identify the clinical signs of cognitive decay at their onset, taking also into account the observations of relatives.
• The general practitioner should assess the presence of symptoms of depression in case of cognitive behavioral alterations.
• Delirium can be suspected in subjects presenting a clinical/behavioral profile similar to the one described by diagnostic criteria.

• Nurses should maintain a high index of suspicion for the prevention, early recognition, and urgent treatment of delirium to support positive outcomes.
• Nurses should initiate standardized screening methods to identify risk factors for delirium on initial and ongoing assessments.
• Nurses should maintain a high index of suspicion for the early symptoms of dementia to initiate appropriate assessments and facilitate individualized care.
• Nurses should maintain a high index of suspicion for early recognition/early treatment of depression to facilitate support and individualized care.

• Physicians should be aware that most dementias may be proceeded by a recognizable phase of mild cognitive decline. Physicians should closely monitor individuals who have mild cognitive impairment or cognitive impairment without dementia because of the known increased risk of both dementia and death.
• In cases where there is suspicion of cognitive impairment or concern about the patient's cognitive status, and the MMSE score is in the "normal" range, other cognitive assessment instruments could be administered to help demonstrate objective cognitive loss.

• Assess the patient's cognition, mood, and behavior using a validated tool, such as the MDS 3.0 instrument.
• Decide if further workup is useful and appropriate.
• Evaluate if the patient meets the criteria for a diagnosis of dementia.
• Consider consultation with appropriate specialists for neuropsychiatric evaluation and testing if basic workup and testing do not enable adequate assessment of the patient's conditions, identification of the causes of the patient's symptoms, or proper management. Formal neuropsychological testing may also be helpful when the results of screening tests are inconsistent with clinical observations of the degree and type of cognitive impairment. Neuropsychological testing also has the benefit of being able to identify the patient's cognitive assets and weaknesses.

• Psychologists conducting evaluations of dementia and age-related cognitive change:
  • Know the prevailing diagnostic nomenclature and specific diagnostic criteria.
  • Are familiar with the broad range of psychological and medical conditions that can affect an individual's cognitive status and are able to differentiate between psychiatrically related cognitive impairment and mood changes that sometimes signal the onset of dementia.
  • Are aware of the challenge of informed consent in dementia evaluations and know feasible, ethical options for obtaining informed consent.
  • Are aware of complex issues that arise during dementia evaluation, e.g., multiple medical comorbidities, medication side effects, genetic and heritability issues, abuse or neglect, issues regarding legal competence or guardianship, conflicting or unclear assessment results, and families divided by the potential diagnosis; they consult with a wide array of other professionals to understand these issues, and refer persons with possible dementia to these other professionals to support availability and integration of the full range of information to inform decisions about diagnosis, level of severity, and treatment plan.
  • Are aware of and attempt to reduce or eliminate the effects of cultural perspectives, personal and societal biases, and tests that are inappropriate for an individual on the diagnostic evaluation.
  • Attempt to obtain all medical records and other relevant information to support the diagnostic evaluation, recognizing that persons with dementia may not be able to provide accurate information.
  • Conduct a clinical interview with the person with possible dementia as part of the evaluation and obtain corroboration from knowledgeable informants.
  • Use standardized psychological and neuropsychological tests that measure multiple cognitive domains as part of the evaluation.
  • Recognize that technology-assisted assessments are advancing but still lack necessary norms and data on psychometric properties.
  • Recognize the need to estimate premorbid abilities to determine whether the decline from a previously higher level of cognitive function (which is required for a diagnosis of dementia) has occurred.
  • Recognize that there are multiple sources of variability and error in psychometric performance of tests and diagnostic decision making and are appropriately qualifying their judgments and conclusions.

• Conduct a complete medical history including a comprehensive review of medications (including over-the-counter and alternative medications).
• Encourage patient to allow collateral information to be obtained from family and caregivers to assist with diagnosis.
• Rule out/treat remediable contributory causes of cognitive impairment such as delirium and depression, hyponatremia, thyroid disorders, alcohol dependence, adverse drug effects and polypharmacy and comorbid diseases.
• When contributory causes have been ruled out or treated and cognitive impairment persists, suspect mild cognitive impairment or dementia.
• When available, consider referral to secondary services for the following: diagnostic uncertainty or atypical features; rapid decline in cognition; under 65 years of age; management issues that are difficult to resolve; risk of harm to self or others.

• Make a formal diagnosis using a standardized instrument and with input from a family member.
• Consider referral to a specialty memory care practice.
• Evaluate the patient for treatable causes of cognitive impairment or excess disability.
• Discuss the diagnosis, progression, treatment choices, and goals of Alzheimer's disease care with the patient and family in a manner consistent with their values, preferences, culture, educational level, and patient's abilities.

• Diagnosis of dementia should be made through a comprehensive assessment that includes but is not limited to the following: history taking, physical and neurological examinations; evaluation of cognitive function and mental state using a standardized neuropsychological examination; assessment of ADLs; brain imaging; and laboratory tests.
• History taking in patients with dementia should obtain sufficient information that includes the following: the time of onset, the pattern of progression, cognitive impairment, and behavioral changes; behavioral and psychological symptoms of dementia from a mental state examination; interviews of reliable informants.
• Cognitive assessment should involve a brief cognitive test in a more detailed neuropsychological battery.
• ADL impairment is an essential part of the diagnostic criteria for dementia and should be included in the diagnostic evaluation.
• Laboratory tests of dementia should be aimed at assessing medical states that could affect cognitive functioning or become the primary cause of dementia.
• Structural and functional brain imaging should be performed for the diagnosis of dementia.

• Components of a full dementia evaluation can vary depending on the presentation including tests to rule in or out the various causes of cognitive impairment and establish its severity.
• Diagnostic evaluations include a complete medical history; assessment of multiple cognitive domains, including episodic memory, executive function, attention, language, and visual-spatial skills; neurologic exam; ADL and IADL functioning; assessment for depression; and review for medications that may adversely affect cognition.
• Standard laboratory tests include TSH, complete blood count, serum B-12, folate, complete metabolic panel, and, if the patient is at risk, testing for sexually transmitted diseases.
• Structural brain imaging, including MRI or CT, is a supplemental aid in the differential diagnosis of dementia, especially if neurologic physical exam findings are noted.
• An MRI or CT can be especially informative in the following cases: dementia that is of recent onset and is rapidly progressing; younger onset dementia; history of head trauma; or neurologic symptoms suggesting focal disease.
• Informants (family member, caregiver, etc.) can provide valuable information about the presence of a change in cognition.

• Obtaining data from an independent and reliable informant is recommended.
• The execution of a general physical and neurological examination of patients with dementia is recommended to detect comorbidity and associated neurological signs that may help towards the differential diagnosis of some subtypes of dementia.
• Neuropsychological testing: patients with cognitive complaints must be assessed by means of global cognition screen tests, neuropsychological test batteries, short cognitive instruments focused on specific aspects of cognition or standardized structured questionnaires to quantify the degree of cognitive impairment. The dementia diagnosis must include a formal objective cognitive assessment with validated instruments. The choice of a specific instrument must be made depending on the time available, on the clinical experience and on the availability of regulatory data in the language and in the medium where they will be applied.
• Cerebrospinal fluid analysis must always be performed whenever dementia secondary to an infection or encephalitic process is suspected.
• MRI is recommended to detect vascular changes with greater sensitivity than CT.
• Genetic analyses: In patients with prion diseases, a genetic study would be indicated in all cases, regardless of family history or age. A genetic study is also recommended if Huntington's disease is suspected, to confirm the diagnosis.

• When the diagnosis remains unclear, the patient may be referred for more extensive screening and neuropsychological testing, which might provide more direction and support for the patient and caregivers.
• Laboratory tests are valuable in differentiating irreversible from reversible forms of dementia.

• PCPs should evaluate with a full diagnostic assessment if cognitive impairment is detected.
• PCPs should rule out reversible, physiological causes of cognitive impairment as described in published clinical practice guidelines.
• Qualified PCPs should conduct a full diagnostic evaluation as described in published clinical practice guidelines.
• PCPs who are unfamiliar with a full dementia diagnostic evaluation should refer the patient to a clinical specialist or specialty team.

• A neurological and physical examination should be performed on all patients with dementia.
• ADLs impairment because of cognitive decline is an essential part of the diagnostic criteria for dementia and should be assessed in the diagnostic evaluation.
• Cognitive assessment should be performed in all patients. Quantitative neuropsychological testing should be made in patients with questionable or very early Alzheimer's disease. The assessment of cognitive functions should include a general cognitive measure and more detailed testing of the main cognitive domains, and in particular an assessment of delayed recall. In patients with moderate memory impairment cued recall could be more appropriate than free recall.
• CT and MRI may be used to exclude treatable causes of dementia.
• EEG is recommended in differential diagnosis of atypical clinical presentations of Alzheimer's disease.
• Routine cerebrospinal fluid analysis is recommended in differential diagnosis for atypical clinical presentations of Alzheimer's disease.
• Screening for known pathogenic mutations can be undertaken in patients with appropriate phenotype or a family history of an autosomal dominant dementia. Routine genotyping is not recommended.

• All patients with early-onset dementia (before age 65) should be referred to a memory clinic, preferably one with access to genetic counseling and testing.
• After exclusion of delirium, persons with rapidly progressive dementia should be referred to physicians who are experienced with the condition and are able to provide an organized and comprehensive diagnostic process.

• A diagnosis of dementia should be made only after a comprehensive assessment, which should include: history taking, cognitive and mental state examination, physical examination and other appropriate investigations, a review of medications to identify and minimize use of drugs, including over-the-counter products that may adversely affect cognitive functioning.
• The experience of the diagnosis of dementia is challenging both for people with dementia and family members and for health care professionals, so health care professionals should make time available to discuss the diagnosis and its implications with the person with dementia and also with family members. Health care professionals should be aware that people with dementia and family members may need ongoing support to cope with the difficulties presented by the diagnosis.
• Following a diagnosis of dementia, health and social care professionals should, unless a person with dementia clearly indicates to the contrary, provide them and their family with written information about: the signs and symptoms of dementia, the course and prognosis of the condition, treatments, local care and support services, support groups, sources of financial and legal advice and advocacy, medical legal issues, including driving, local information sources, including libraries and voluntary organizations. Any advice and information given should be recorded in the notes.

• Perform a diagnostic evaluation and refer the patient for any needed general medical care. Patients with dementia should undergo a thorough diagnostic evaluation aimed at identifying the specific etiology of the dementia syndrome, because knowledge of the etiology may guide specific treatment decisions. In addition, evaluation should determine if any treatable psychiatric or general medical conditions might be causing or exacerbating the dementia.
• The evaluation of a patient with dementia frequently involves coordination with a number of medical professionals, including the patient's primary care physician. It should include a clear history of the onset and progression of symptoms; a review of patient's medical problems and medications; assessment of functional abilities; a complete physical examination and a focused neurological examination; and a psychiatric examination, including a cognitive assessment that should include at least a brief assessment of the cognitive domains of attention, memory, language, and visual-spatial skills, ideally used with age and education-adjusted norms. An assessment for past or current psychiatric illnesses that might mimic or exacerbate dementia is also critical, as are laboratory studies. Many elements of the history will need to be obtained from the caregiver or the documented medical record and from the patient. Often, it may be necessary to conduct a portion of the interview with the caregiver without the patient present, to allow for full disclosure of sensitive information.
• Risks of driving should be discussed with all patients with dementia and their families, and these discussions should be carefully documented. Discussions should include an exploration of the patient's current driving patterns, transportation needs, and potential alternatives. For patients with dementia who continue to drive, the issue should be raised repeatedly and reassessed over time.

• The general practitioner raises the diagnostic hypothesis of dementia through previous knowledge, a general examination, an assessment of possible iatrogenic causes, and a structured interview, carried out within a multiprofessional team.
• General practitioners should assess all pathological conditions that could cause cognitive disorders.
• General practitioners should assess for risk factors because of social isolation.
• General practitioners should prescribe blood tests and a brain imaging exam to patients with suspected dementia.

• Some specialty memory disorder clinics that use a team approach have a standing referral for clients that includes an occupational therapy evaluation is an integral part of a comprehensive assessment for dementia.

• Clinical diagnosis should include medical history, laboratory, neurological, and physical examination. Clinical history should be supplemented by an informant. Cognitive assessment is central to diagnosis and management of dementia and should be performed in all patients.
• Diagnosis should include assessment of cognitive functions, screening tests, and assessment of specific cognitive domains.
• Assessment of behavioral and psychological symptoms of dementia is essential for both diagnosis and management and should be performed in each patient.
• ADL and IADL impairment because of cognitive decline is an essential part of the diagnostic criteria for dementia and should be assessed in the diagnostic evaluation.
• Assessment of comorbidity is important in demented patients, both at the time of diagnosis and throughout the course of the illness and should always be considered as a possible cause of behavioral and psychological symptoms of dementia.
• Structural imaging should be used in the evaluation of every patient affected by dementia.
• Routine cerebrospinal fluid analysis may help to rule out or rule in certain infectious causes.

• The diagnosis of dementia remains clinical.
• Neuropsychological assessment alone cannot be used for diagnosis or differential diagnosis of dementia, but in-depth neuropsychological testing can be recommended to aid in the confirmation of the diagnosis.
• Primary care physicians should communicate appropriate information concerning dementia, including realistic treatment expectations, to patients and their families.
• The process of diagnostic disclosure for a person with cognitive impairment or dementia must begin as soon as the possibility of cognitive impairment is suspected.
• Both the diagnosis of dementia and the disclosure of the diagnosis much be considered processes that provide opportunities for education and discussion.
• The potential for adverse psychological consequences of diagnostic disclosure must be assessed and addressed through education of the patient and the family/caregivers.
• Although each case should be considered individually, in general the diagnosis of dementia should be disclosed to the patient and family in a manner that is consistent with the expressed wishes of the patient. This process should include a discussion of prognosis, diagnostic uncertainty, advance planning, driving issues, treatment options, support groups, and future plans.
• Follow-up plans must be made and discussed at the time of diagnostic disclosure.

• Direct care workers observe the resident's comfort level at the end-of-life and report symptoms to their supervisors such as:
  • Changing behaviors, such as becoming more withdrawn or agitated.
  • Change in mental status, such as increased confusion or lack of responsiveness.
  • Verbal communication, such as yelling or calling out.
  • Motor restlessness.
  • Facial grimacing or teeth grinding.
  • Gestures that may communicate distress.
  • Rigidity of body posture and position or posturing of extremities.
  • Labored breathing pattern.
  • Changes in swallowing ability.
  • Loss of appetite and thirst.
  • Excessive thirst.
  • Disturbed or restless sleep.
  • Scratching or picking at skin or other body parts.
  • Changes in skin condition, such as bruising, open or discolored areas.
  • Excessive sweating.
  • Dry mouth or problem with oral cleanliness.
  • Excessive oral secretions or drooling.
  • Accumulation of secretions in the eyes, nose, lungs, genitalia.
  • Bowel patterns and incontinence.
  • Change in general cleanliness, such as dirty nails, body odor, etc.
  • Change in grooming habits, such as unkempt hair, unbrushed teeth, etc.
• Direct care workers observe residents behavioral and psychological symptoms and report the symptoms to their supervisors such as:
  • Changes in attention span.
  • Changes in level of arousal (distractible, inattentive, fluctuating arousal, variably alert).
  • Psychomotor agitation.
  • Changes in mood/affect.
  • Hallucinations.
  • Withdrawal from others.
  • Groaning or calling out.
  • Facial grimacing.
  • Striking out or other physical gestures of discomfort or distress.

• A holistic assessment includes understanding a resident's:
  • Cognitive health.
  • Physical health.
  • Physical functioning.
  • Behavioral status.
  • Sensory capabilities.
  • Decision making capacity.
  • Communication abilities.
  • Personal background.
  • Cultural preferences.
  • Spiritual needs and preferences.
• Assessments should acknowledge that the resident's functioning might vary across different staff shifts.
• Thorough assessment includes obtaining verbal information directly from residents and from family when possible.
• Regular formal assessment, as required by federal or state regulation, is key to appropriate management of resident's care. Equally important is ongoing monitoring and assessment of residents, particularly upon return from the hospital or upon a significant change in their condition.
• Provide good screening and preventive systems for nutritional care.
• Treat pain as the "fifth vital sign" by routinely assessing and treating it in a formal systematic way, as one would treat blood pressure, pulse, respiration and temperature.
• Ensure that causes of wandering are assessed and addressed, with particular attention to unmet needs.

• Assess family members to identify needs for education, support and services and reassess as the person's dementia progresses or the caregiver's health and emotional well-being is impacted.
• A person showing behavioral symptoms needs a thorough medical evaluation especially when symptoms come on suddenly.
• Assessment of behavioral symptoms can also include nonmedical causes such as a change in the person's care, admission to the hospital, a change in care provider, the presence of houseguests, or a request to bathe or change clothes at a different time of day. Assessment should also address personal comfort, pain, hunger, thirst, constipation, full bladder/bowel and fatigue. Loss, boredom and isolation can also cause behavioral symptoms.
• Direct care providers need to be able to recognize behavioral symptoms of dementia and communicate the symptoms to supervisors or other members of the home care team.
• Improve pain assessment and treatment by routinely assessing pain as the fifth vital sign.
• Monitor the person for changes in eating and drinking habits and help him or her avoid significant weight loss or gain. Any significant changes should be communicated to the physician.
• Assess the causes of wandering and address any unmet needs that may be inducing the behavior.
• Identify problems that have led to restraint use in the past and address them using other methods.
• Evaluate surroundings for any particular dangers and intervene to ensure safety at all times.
• Assess the person's ability to manage daily activities and be alert to any changes in condition.
• Monitor for caregiver strain or stress.

• Soon after admission or a significant condition change, assess the patient's capabilities in various domains.
• Assess the patient's cognition, mood and behavior using a validated tool, such as items in the MDS 3.0 instrument.

• Psychologists recognize the value of longitudinal follow-up for monitoring change in cognitive status.

• Conduct an assessment to evaluate the person's behavioral symptoms and define specific goals.
• Assess for possible causes and triggers that may contribute to behavioral and psychological symptoms of dementia. It is important to have a baseline reference point, including information from others on admission, to enable comparisons of newly expressed behaviors over time.
• Assess for possible medical causes for the behaviors through a comprehensive assessment and review of medical and psychiatric history and to distinguish dementia from depression or delirium.

• Conduct and document an assessment and monitor changes in:
  • Daily functioning, including feeding, bathing, dressing, mobility, toileting, continence, and ability to manage finances and medications.
  • Cognitive status using a reliable and valid instrument.
  • Comorbid medical conditions which may present with sudden worsening in cognition, function, or as change in behavior.
  • Behavioral symptoms, psychotic symptoms, and depression.
  • Medications, both prescription and nonprescription (at every visit).
  • Living arrangement, safety, care needs, and abuse or neglect.
  • Need for palliative or end-of-life care planning.
• Reassessment should occur at least every 6 months, and sudden changes in behavior or increase in the rate of decline should trigger an urgent visit to the PCP.
• Identify the primary caregiver and assess the adequacy of family and other support systems, paying particular attention to the caregivers on mental and physical health.
• Assess the patient's decision making capacity and determine whether a surrogate has been identified.
• Identify the patient's and family's culture, values, primary language, literacy level, and decision making process.
• Use a structured approach to the assessment of patient capacity, being aware of the relevant criteria for particular kinds of decisions.

• Regularly reassess the psychoactive side effects of prescription and nonprescription medications and alcohol and other substance abuse.

• Assessment of behavioral and psychological symptoms of dementia is essential for both diagnosis and management, and should be performed in all patients.
• ADLs should be assessed in all patients for diagnosis of dementia. Assessment of ADLs should include both the physical and instrumental fields.

• Incentivize documentation and tracking of level of functional and cognitive status to identify people with advanced dementia.
• Use quality metrics to measure effective symptom assessment.

• The Annual Wellness Visit requires the completion of a Health Risk Assessment by the patient either before or during the visit. The Health Risk Assessment should be reviewed for any reported signs and symptoms indicative of possible dementia.
• The Annual Wellness Visit will likely occur in a primary care setting. Tools for initial cognitive assessments should be brief (less than 5 minutes), appropriately validated, easily administered by nonphysician clinical staff, and available free of charge for use in a clinical setting.
• If further evaluation is indicated based on the results of the Annual Wellness Visit, a more detailed evaluation of cognition should be scheduled for a follow-up visit in primary care or through referral to a specialist.
• By assessing and documenting cognitive status on an annual basis during the Annual Wellness Visit, clinicians can more easily determine gradual cognitive decline over time in an individual patient--a key criterion for diagnosing dementia because of Alzheimer's disease and other progressive conditions affecting cognition.
• Annual unstructured and structured cognitive assessments could be used to monitor significant changes in cognition and potentially lead to a new diagnosis of dementia for those with mild cognitive impairment or new care recommendations for those with dementia.
• The first step in detection of cognitive impairment during the Annual Wellness Visit involves a conversation between the clinician and the patient and, if present, any family member or other person who can provide collateral information. This introduces the purpose and content of the visit, which includes: a review of the Health Risk Assessment; observations by clinicians (medical and associated staff); acknowledgment of any self-reported or informant-reported concerns; and conversational queries about cognition directed toward the patient and others present.
• A noted deficit in ADLs (e.g., eating and dressing) or IADLs (e.g., shopping and cooking) that cannot be attributed to physical limitations should prompt concern, as there is a strong correlation between decline in function and decline in cognitive status across the full spectrum of dementia.
• Recognizing that there is no single optimal tool to detect cognitive impairment for all patient populations and settings, clinicians may select other brief tools to use in their clinical practice.
• Any patient who does not have an informant present should be assessed with the structured tool.

• The reasons for behavioral expressions are complex and vary by individual. Determine the root cause of the behavior and then address the cause, such as pain, hunger, thirst, boredom, illness, loneliness, or an underlying medical condition that the person with dementia is challenged to communicate.

• The assessment of the impact of cognitive impairment on the ADLs is recommended given their affectation, which forms the dementia diagnostic criterion and determines the subsequent management of these patients.
• An assessment of the psychological and behavioral symptoms is recommended because of their importance for the diagnosis.
• The systematic assessment of the presence of BPSD is recommended as a fundamental component of the clinical picture, as it appears very frequently, it is difficult to manage, it has an impact on the quality of life and is a frequent reason for urgent care, family claudication and institutionalization.
• The use of specifically designed instruments is recommended to evaluate BPSD in dementia independently from cognitive and functional alterations.
• Starting treatment with nonpharmacological strategic measures to manage BPSD is recommended.
• A meticulous assessment is recommended if behavioral and psychological symptoms of dementia appear, to rule out concomitant pathology and achieve optimal environmental surroundings.
• Sensory stimulation, behavioral therapy, structured activities and social contact should be used to reduce the incidence of behavioral and psychological symptoms of dementia, although there is no scientific evidence to support this.
• It is advisable to inform and train caregivers of dementia patients on strategies to address and manage the behavioral and psychological symptoms of dementia so that it is possible to adopt and promote an appropriate attitude towards patients and prevent strain and claudication of the caregivers.

• Assessment domains include cognitive, functional, behavioral, physical, caregiver, and environment.
• Tests that assess functional limitations are useful in monitoring the progression of functional decline.
• Assess and monitor for behavioral changes; in particular, the presence of agitation, aggression, anxiety, disinhibitions, delusions, and hallucinations.
• Evaluate for depression because it commonly coexists in individuals with dementia.
• A comprehensive physical examination with a focus on the neurological and cardiovascular system is indicated in individuals with dementia to identify the potential cause or existence of a reversible form of cognitive impairment.
• A thorough evaluation of all prescribed, over-the-counter. Homeopathic, herbal, and nutrition products taken is done to determine the potential impact on cognitive status.
• Follow-up appointments are regularly scheduled; frequency depends on the patient's physical, mental, and emotional status and caregiver needs.

• Determine if MMSE scores are available or can be obtained. This would facilitate determination of patient ability to provide valid self-report.
• Baseline scores should be collected for each individual (ideally on a regular basis which would allow for the examination of unusual changes from the person's typical pattern of scores).
• Patient history and physical examination results should be taken into consideration.
• If assessments are to be repeated over time, assessment conditions should be kept constant (e.g., use the same assessment tool, use the same assessor where possible and conduct pain assessment during similar situations).
• Pain assessment results should be used to evaluate the efficacy of pain management interventions.
• Use of synonyms when asking about the pain experience (e.g., hurt, aching) will facilitate the self-report of some patients who have limitations in ability to communicate verbally.
• Self-report scales should be modified to account for any sensory deficits that occur with aging (e.g., poor vision, hearing difficulties).
• Use self-report tools that have been found to be the most valid among seniors (e.g., the Colored Analog Scale, Numeric Rating Scales, Behavioral Rating Scales, 21 Point Box Scale).
• Use of horizontal visual analog scales should be avoided, as some investigators have found unusually high numbers of unscorable responses among seniors.
• Observational tools that have been shown to be reliable and valid for use in this population include PACSLAC and DOLOPLUS-2. The PACSLAC is the only tool that covers all 6 behavioral pain assessment domains that have been recommended by the American Geriatrics Society. Nonetheless, clinicians should always exercise caution when using these measures because they are relatively new and research is continuing.
• When assessing pain in acute care settings tools that primarily focus on evaluation of change over time should be avoided.
• Observational assessments during movement-based tasks would be more likely to lead to the identification of underlying pain problems than assessments during rest.
• Some pain assessment tools do not have specific cutoff scores because of recognition of tremendous individual differences among people with severe dementia. Instead, it is recommended that pain be assessed on a regular basis (establishing baseline scores for each patient) with the clinician observing score changes over time.
• Examination of pain assessment scores before and after the administration of analgesics is likely to facilitate pain assessment.
• Some of the symptoms of delirium (which are seen frequently in long-term care) overlap with certain behavioral manifestations of uncontrolled pain (e.g., behavioral disturbance). Clinicians assessing patients with delirium should be aware of this. On the positive side, delirium tends to be a transient state, and pain assessment, which can be repeated or conducted when the patient is not delirious, is more likely to lead to valid results. It is important to note also that pain can cause delirium, and clinicians should be astute to avoid missing pain problems among patients with delirium.
• Observational pain assessment tools are screening instruments only and cannot be taken to represent definitive indicators of pain. Sometimes they may suggest the presence of pain when pain is not present, and at other times they may fail to identify pain.
• In addition to improved scores on various assessment tools, evidence of more effective pain management can be observed in areas such as greater participation in activities, improved sleep, reduced behavioral disturbance, improved ability to ambulate, and improved social interactions.

• Attempts should be made to obtain self-report of pain from all patients. When self-report is absent or limited, explain why self-report cannot be used and further investigation and observation are needed.
• Iatrogenic pain associated with procedures should be treated before initiation of the procedure.
• A change in behavior requires careful evaluation of pain or other sources of distress, including physiologic compromise (e.g., respiratory distress, cardiac failure, hypertension). Generally, one may assume that pain is present, and if there is reason to suspect pain, an analgesic trial can be diagnostic and therapeutic. Other problems that may be causing discomfort should be ruled out (e.g., infection, constipation) or treated.
• In the absence of self-report, observation of behavior is a valid approach to pain assessment. Establish a procedure for pain assessment:
  • Identify pathologic conditions or procedures that may cause pain. Consider common chronic pain etiologies. Musculoskeletal and neurologic disorders are the most common causes of pain in older adults.
  • List patient behaviors that may indicate pain. A behavioral assessment tool may be used. Observe facial expressions, verbalizations/vocalizations, body movements, changes in interactions, changes in activity patterns or routines, and mental status. Behavioral observation should occur during activity whenever possible.
  • Identify behaviors that caregivers and others knowledgeable about the patient think may indicate pain. In the long-term care setting, the certified nursing assistant is a key health care provider shown to be effective in recognizing presence of pain. The family is helpful if they visit regularly.
  • Attempt an analgesic trial. Estimate the intensity of pain based on information obtained from prior assessment steps and select appropriate analgesic. Opioid dosing in older adults warrants initial dose reduction to 25% to 50% of adult dose.

• Assessment of behavioral and psychological symptoms of dementia should be performed in each patient. Information should be gathered from an informant using an appropriate rating scale.

• Assessment by an occupational therapist or another member of the health care team can help determine what the patient is capable of doing independently with the help of aids and with which activities the patient needs assistance.
• An environmental assessment can identify modifications that can be made to a home to reduce a person's risk of falling and wandering off.

• Nonpharmacologic interventions for agitation and aggression in dementia include recognition and management of potentiating factors (medical, psychiatric, medications, environment).

• All people with suspected or known dementia using inpatient services are assessed by a liaison service that specializes in the treatment of dementia. Care for such people in acute care should be planned jointly by the hospital staff, liaison teams, relevant social care professionals and the person with suspected or known dementia and his or her carers.
• At the time of diagnosis of dementia, and at regular intervals subsequently, assessment should be made for medical comorbidities and key psychiatric features associated with dementia, including depression and psychosis, to ensure optimal management of coexisting conditions.
• Care for people with dementia should include assessment and monitoring for depression or anxiety. A range of tailored interventions, such as reminiscence therapy, multisensory stimulation, animal assisted therapy and exercise, should be available for people with dementia who have depression or anxiety.

• Staging of Dementia: Percentage of patients, regardless of age, with a diagnosis of dementia whose severity of dementia was classified as mild, moderate or severe at least once within a 12-month period.
• Cognitive Assessment: Percentage of patients, regardless of age, with a diagnosis of dementia for whom an assessment of cognition is performed and the results reviewed at least once within a 12-month period.
• Functional Status Assessment: Percentage of patients, regardless of age, with a diagnosis of dementia for whom an assessment of functional status is performed and the results reviewed at least once within a 12-month period.
• Neuropsychiatric Symptom Assessment: Percentage of patients, regardless of age, with a diagnosis of dementia and for whom an assessment of neuropsychiatric symptoms is performed and results reviewed at least once in a 12-month period.
• Screening for Depressive Symptoms: Percentage of patients, regardless of age, with a diagnosis of dementia who were screened for depressive symptoms within a 12-month period.

• The treatment of patients with dementia should be based on a thorough psychiatric, neurological, and general medical evaluation of the nature and cause of the cognitive deficits and associated noncognitive symptoms, in the context of a solid alliance with the patient and family.
• It is particularly critical to identify and treat general medical conditions, most notably delirium, that may be responsible for or contribute to the dementia or associated neuropsychiatric symptoms.
• Ongoing assessment includes periodic monitoring of the development and evolution of cognitive and noncognitive psychiatric symptoms and their response to intervention.
• Recommended assessments include evaluation of suicidality, dangerousness to self and others, and the potential for aggression, and evaluation of living conditions, safety of the environment, adequacy of supervision, and evidence of neglect or abuse.
• To offer prompt treatment, enhance safety, and provide timely advice to the patient and family, it is generally necessary to see patients, usually together with their caregivers, in routine follow-up at least every 3-6 months. Patients who require active treatment of psychiatric complications should be seen regularly to adjust doses and monitor for changes in target symptoms and side effects.
• Monitor and enhance the safety of the patient and others: the psychiatrist should assess suicidality, assess the potential for aggression and agitation, make recommendations regarding adequate supervision, for example, medication administration, make recommendations regarding the prevention of falls and choking, address nutritional and hygiene issues, and be vigilant regarding neglect or abuse. Patients who live alone require careful attention. Events that indicate that the patient can no longer live alone include several falls, repeated hospitalization, dehydration, malnutrition, repeated errors and taking prescribed medication, dilapidated living conditions, or other signs of self-neglect. Other important safety issues in the management of patients with dementia include interventions to decrease the hazards of wandering and recommendations concerning activities such as cooking, driving, hunting, and the operation of hazardous equipment.

• General practitioners should assess the presence of comorbidities.

• Nurses should use the diagnostic criteria from the DSM-IV-R to assess for delirium, and document mental status observations of hypoactive and hyperactive delirium.
• Nurses must monitor, evaluate, and modify the multicomponent intervention strategies on an ongoing basis to address the fluctuating course associated with delirium.
• Nurses should contribute to comprehensive standardized assessments to rule out or support the identification and monitoring of dementia based on their ongoing observations and expressed concerns from the client, family, and interdisciplinary team.
• Nurses caring for clients with dementia should be knowledgeable about pain assessment and management in this population to promote physical and emotional well-being.
• Nurses should use the diagnostic criteria from the DSM-IV-R to assess for depression.
• Nurses should use standardized assessment tools to identify the predisposing and precipitating risk factors associated with depression.
• In care settings where Resident Assessment Instrument and MDS instruments are mandated assessment tools, nurses should use the MDS data to assist with assessment for delirium, dementia and depression.

• Occupational Therapy evaluation questions should be directed toward the client, allowing the client to take an active and central role in the interview process. Information is gathered through an occupational profile, analysis of occupational performance, and standardized and nonstandardized assessments.
• If cognition is the primary concern limiting participation, a brief cognitive assessment using a screening tool such as the Large Allen Cognitive Lacing Screen is administered to determine whether a full cognitive functional assessment is warranted.
• An individual with cognitive deficits may exhibit a decline or impairment in performance of functional activities caused by comorbidities that affect motor and praxis, sensory-perceptual, emotional regulation, cognitive, communication, and social skills. One difficulty in assessment with comorbidities is delineating the source of the performance deficit. With clinical expertise, all factors that limit occupational performance are considered, along with thinking, memory, or executive function abilities.
• The purpose of an occupational therapy evaluation is to design an intervention plan to create opportunities for participation, maintain occupational performance or modify activity demands, or prevent deterioration in performance capability. The area of occupation targeted depends on the cognitive ability of the client and stage of the disease. For instance, the focus of intervention in the early stages work or employment, if applicable, and IADL participation, whereas the focus in the middle and later stages of the disease is ADL performance. Leisure, social participation, and rest/sleep are considered through the early to the later stages of the disease.
• Occupational therapy evaluation with people with Alzheimer's disease entails an exploration of the activity demands relative to the client's capabilities.
• The purpose of the evaluation is to determine what potential the client brings to the intervention process and to identify the barriers to optimal performance on the basis of physiological functions of body systems or personal values and beliefs.

• Cognitive assessment is central to diagnosis and management of dementia and should be performed in all patients.
• Assessment of behavioral and psychological symptoms of dementia is essential for both diagnosis and management and should be performed in each patient.
• Assessment of comorbidity is important in demented patients, both at the time of diagnosis and throughout the course of the illness and should always be considered as a possible cause of behavioral and psychological symptoms of dementia.
• Advice either to allow driving, but to review after an interval, to cease driving, or to refer for retesting should be given.

• Determination of how medications are being consumed and identification of any problems/concerns with medication management, including poor adherence, should be conducted for all patients with mild or moderate dementia. The effectiveness of any alterations in medication management has to be assessed.
• Assess cognitive status, functional abilities, and behavior and neuropsychiatric symptoms, and reassess regularly.
• Obtain information from caregivers about the person's cognition, behavior, and social and daily functioning.
• Patients with sleep problems should be assessed for medical illnesses (including pain), psychiatric illnesses (including depression), potentially contributing medications, poor sleep habits (including naps), and environmental factors that may be adversely affecting sleep.
• Patients with severe dementia should be assessed at least every 4 months. Assessment should include cognition, function, behavior, medical status, nutrition, safety, and caregiver health.
• Clinicians should counsel persons with a progressive dementia and their families that giving up driving will be an inevitable consequence. Strategies to ease this transition should occur early in the clinical course of the condition. The driving ability of persons in earlier stages of dementia should be tested on an individual basis. For persons deemed safe to drive, reassessment of their ability to drive should occur at least every 6-12 months.

• Care plans need to be flexible enough to adapt to daily changes in a resident's needs and wishes.
• Regularly scheduled care planning meetings that involve the resident, proxy decision makers, family and the broader care team facilitate communication about end-of-life care and help ensure that care is person-centered and adapted to the resident's changing condition.
• As the resident's condition declines with the progression of dementia, care goals may change from curing coexisting conditions or preserving function to palliative care. It is important to reevaluate and, if necessary, revise the care goals and decisions and regularly schedule care planning meetings based on the resident's current status, desires regarding care and family input.

• Effective care planning includes a resident and family, when appropriate, and all staff (including direct care staff) who regularly interact with the resident throughout the process.
• An effective care plan builds on the residents abilities and incorporate strategies such as task breakdown, fitness programs and physical or occupational therapy to help residents complete their daily routines and maintain their functional abilities as long as possible.
• When all staff involved in a resident's care are familiar with the care plan, they will be better equipped to provide appropriate care to the resident.
• Care plans will remain current and most useful if they are regularly updated in conjunction with periodic assessments.
• Care plans need to be flexible enough to adapt to daily changes in a resident's needs and wishes.

• To ensure that home care is person-centered and aligned with an individual's choices, there must be good communication among the individual living with the disease and his or her health care proxy decision maker, family caregivers and entire care team.
• During care planning, discuss the person's choices about end-of-life care and any related doctor's orders. Based on these choices, the person and family need to know what the agency will do at the end of life.
• Effective care plans use information from the assessment to design a set of services that will meet a person's needs and maximize his or her independence.
• The care plan stays useful over time if it is regularly updated and modified as a person's needs, abilities and wishes change.
• When providers and family members understand the care plan and determine roles and responsibilities, they will be better able to provide care.
• Care plans should identify family caregivers and address family caregiver needs.

• Prognostication is important in the long-term care setting for appropriate care planning and timely use of available resources. Prognostication is not a guarantee of future events but rather an estimate of what can be reasonably expected. Prognostication of dementia is challenging; evidence supports using age, decline and functional status and oral intake, and increasing dependence in ADLs as the most important features in determining prognosis in end-stage dementia.
• Prepare an individualized interdisciplinary care plan that defines treatment goals that are appropriate for the individual patient, taking into account the wishes of the patient or family; incorporates definite, measurable objectives derived from those treatment goals; and, allows for modification as the patient's needs change.

• Select psychological and meaningful social interventions based on individualized goals of care.
• Continue to assess whether the goals of treatment are being met using a reliable tool such as the Pocket Guide Tool on the Assessment and Treatment of Behavioral Symptoms of Older Adults Living in Long-Term Care Facilities.
• A care plan that focuses on nonpharmacological interventions is considered best practice is the first line management of most behavioral and psychological symptoms of dementia.
• Interdisciplinary care plans should be developed by the health care provider in collaboration with the resident and family or substitute decision maker with goals and outcomes carefully documented, evaluated and adjusted as required.

• Be knowledgeable about a person's physical, psychological, social and spiritual history. Assure that the life story is incorporated into the care plan.

• Develop and implement an ongoing treatment plan with defined goals. Discuss with patient and family:
  • Use of cholinesterase inhibitors, NMDA antagonist, and other medications, if clinically indicated, to treat cognitive decline.

• Discuss goals of care.
• Track the patient's outcomes and adjust goals of care as appropriate.

• Determine the continued efficacy of pharmacological/nonpharmacological approaches to the care plan and modify as appropriate.

• PCPs should initiate a care plan to document how ongoing medical management of comorbidities will be done, how progression of dementia-related neuropsychiatric symptoms will be monitored, and how referrals will be made to community resources.

• Assessment of comorbidity is important in Alzheimer's disease patients, both at the time of diagnosis and throughout the course of illness and should always be considered as a possible cause of behavioral and psychological symptoms of dementia. In patients with Alzheimer's disease, treatment with cholinesterase inhibitors should be considered at the time of diagnosis, taking into account expected therapeutic benefits and potential safety issues.
• Regular patient follow-up, which should include scales like the MMSE, to monitor response to treatment and disease progression, should be an integral part of management.
• Currently, there is insufficient evidence to support the use of other agents, including anti-inflammatory drugs, or statins in the treatment or prevention of Alzheimer's disease.
• Antipsychotics should only be used for moderate or severe behavioral and psychological symptoms of dementia causing significant distress which have either not responded to other treatments (like nonpharmacological measures or cholinesterase inhibitors) or when other treatments are not appropriate.

• Goals of care should include reducing the suffering that accompanies the disease, reducing the negative impact on both the patient's health and quality of life and that of his or her family, and optimizing the management of any comorbid conditions.
• Address quality of life by maximizing a person's functional independence, ensuring that he or she has adequate support, effectively managing any behavioral issues that may arise, emphasizing safety, and encouraging socialization and community engagement to the extent that the person is comfortable with it and enjoys it.
• Address risks such as poor adherence to medication regimens, lack of recognition of adverse drug reactions, falls, delirium and preventable hospitalizations.
• Ongoing monitoring and modification of care goals and treatments will be necessary.
• The care plan for the patient should not place unreasonable expectations on the patient or caregiver; instead, treatment should be adapted to what can be reasonably accomplished.

• Nondiscrimination: people with dementia should not be excluded from any services because of their diagnosis, age or coexisting learning disabilities.
• Acute and General Hospital trusts should plan and provide services that address the specific personal and social care needs and the mental and physical health of people with dementia who use acute hospital facilities for any reason.
• Care plans should address ADLs that maximize independent activity, enhance function, adapt and develop skills, and minimize the need for support. When writing care plans, the varying needs of people with different types of dementia should be addressed. Care plans should always include:
  • Consistent and stable staffing.
  • Retaining a familiar environment.
  • Minimizing relocations.
  • Flexibility to accommodate fluctuating abilities.
  • Assessment and care planning advice regarding ADLs and ADL skill training from an occupational therapist.
• Assessment and care planning advice about independent toileting skills; if incontinence occurs all possible causes should be assessed and relevant treatments tried before concluding that it is permanent.
• Environmental modifications to aid independent functioning, including assistive technology, with advice from an occupational therapist or clinical psychologist.
• Physical exercise with assessment and advice from a physiotherapist when needed.
• Support for people to go at their own pace and participate in activities they enjoy.

• Meaningful and engaging things to do throughout the day are essential to support health and well-being. These rhythms of daily life not only provide purpose and structure to the day, but the meaningful activities help to support life roles and functions that are important to preserving value, self-esteem, and confidence, and to identify and create a sense of belonging.
• Focus on the strengths of the person living with dementia rather than on what abilities and capabilities have been diminished or lost.
• Learn the preferences of the person with dementia for bathing, dressing, grooming, and other ADLs to make these activities comforting and pleasant.

• Specific clinical features influencing the treatment plan include demographic and social factors such as age, gender, ethnic and cultural background, and other demographic and psychosocial factors such as the availability of a spouse, adult child, or other loved one with physical and emotional ability to supervise and care for the patient, communicate with treating physicians, and otherwise coordinate care. In addition, a social network of friends, neighbors, and community may play a key role in supporting the patient and primary caregivers. Spiritual supports and religious beliefs have been shown to have positive benefits for caregivers' well-being. Resource availability varies widely by geographic region and socioeconomic status.
• The development of a treatment plan for a patient with dementia focuses not only on the identification of specific symptoms and associated general medical problems but also depends on features of the environment in which the patient is cared for, as certain issues are specific to particular care settings such as home care, day care, long-term care and inpatient general medical or surgical services.

• The goal of occupational therapy interventions is to maximize the quality of life. With all interventions, the challenge is balancing client safety and performance with maximum independence.
• The intervention plan, developed by an occupational therapist and corroborated with the client (family), reflects client and caregiver needs, occupational therapy evaluation, knowledge of theory, and evidence guiding best practice.
• Throughout the intervention implementation, the client and family responses monitored and recorded, and the intervention is modified on the basis of progress toward the goals. The implementation review is a review of the plan and includes a periodic measure of progress toward the targeted outcomes.

• Even when the patient is safely self-managing their medications, there should be planning for the involvement of a third party in medication management for all patients with a progressive dementia, as this will eventually become necessary in nearly all patients.

• Ease the distress associated with pain and help residents enjoy an improved quality of life.
• Tailor pain management techniques to each resident's needs, circumstances, conditions and risks.

• Enhance a person's quality of life by controlling or minimizing pain and improving his or her function and ability to socialize.
• Tailor pain relief methods to each person's needs and risks and adjust treatment as the person's condition changes.
• If a person uses medications, physicians in consultation with members of the home care team need to consider how they will be given:
  • Can the person with dementia take the medications on his or her own?
  • If not, who will help with medications?
  • Can the practitioner who prescribes the medicine adjust the schedule for taking it so family or home care team members are available to help?
  • Who will be responsible for overseeing changes in medications?
  • Is mail order or pharmacy delivery of medications preferable?
  • What kind of insurance coverage does the person have to help pay for medications?
• A person with dementia should have an up to date medication list (including over-the-counter medications) that is available in his or her medical record and accessible to all health care providers. This will allow providers to identify potential medication related causes of new symptoms, identify and eliminate inappropriate duplication of therapies, correct dangerous interactions, and streamline the regimen to improve adherence.
• A person with dementia should have an annual medication regimen review.
• When a person with dementia is prescribed a new medication, the prescribed medication should have a clearly defined indication.
• A person with dementia and the family caregiver should receive appropriate education about the use of any new medication to improve adherence and clinical outcomes and to alert the person or caregiver to potential adverse effects.
  • When a person is prescribed an ongoing medication for a chronic medical condition, response to therapy should be documented.

• A therapeutic environment should be provided whenever possible. Preventative measures should include:
  • Eliminate or minimize identified risk factors.
  • Avoid high risk medications.
  • Prevent/promptly and appropriately treat infections.
  • Prevent/promptly treat dehydration and electrolyte disturbances.
  • Provide adequate pain control.
  • Maximize oxygen delivery.
  • Use sensory aids as appropriate.
  • Foster orientation.
  • Regulate bowel/bladder function.
  • Provide adequate nutrition.
  • Increase supervised mobility.
  • Increase awareness and vision whenever possible.
  • Minimize use of restraints.
  • Provide appropriate sensory stimulation such as quiet room, adequate light, noise reduction.
  • Foster familiarity such as encourage family/friends to stay at bedside, bring familiar objects from home, minimize relocations.
  • Communicate clearly.
  • Reassure and educate family.
  • Minimize invasive interventions.

• Consider medical interventions if appropriate.
• Monitor the patient's condition and adjust management as appropriate.
• Monitor the facility's management of dementia.

• Recommendations are that antipsychotic medications be used when alternative therapies are ineffective on their own; there is an identifiable risk of harm to the resident and others; and the symptoms are severe enough to cause suffering and distress to the individual.
• Careful consideration of the benefits and risks of treatment should be assessed as research has demonstrated that these medications can produce serious potential adverse effects resulting in a significantly decreased quality of life for the individual including increased confusion, extrapyramidal symptoms, anticholinergic effects including delirium, increased risk of falling, increased risk of cerebrovascular events, and increased risk of death.
• Regularly review the need (or not) for ongoing antipsychotic therapy for behavioral psychological symptoms of dementia and trial withdrawal.

• Drug treatment has limited value; first consider nonpharmacological management of the behavioral and psychological symptoms of dementia.
• Make early and regular use of adjunct services.
• Always start with nonpharmacological interventions.
• Physicians are encouraged to deliver timely, individualized care to the patient and their caregiver and to support patient independence at a level that is appropriate for their cognitive and physical capabilities.
• Consider general care and supplementary supports for patients in the following areas: memory, behavioral symptoms, nutrition, shopping, household safety, medication management, hygiene, socialization, financial and legal issues, driving, self-neglect/neglect/abuse, mental health and specialty services, caregiver support.
• Polypharmacy and multimorbidity can both be causes and effects of cognitive impairment.

• Provide appropriate treatment for comorbid medical conditions.
• Provide appropriate end-of-life care, including palliative care as needed.

• Consider cognition enhancing drugs
• Detect and treat vascular risk factors.
• Manage the patient's comorbid conditions in the context of dementia.

• Early detection of the risk factors of dementia and subsequent medical intervention is important for prevention of dementia. A thorough control of the vascular risk factors is particularly critical for prevention and management of not only cardiovascular or cerebrovascular disease but dementia.
• Behavioral and psychological symptoms often have somatic comorbidity or complications. A possible causative comorbidity or complication should be included in evaluation.

• Ensure access to high-quality palliative care for persons with dementia and their families across all care settings.
• Provide specialized medical care, including relief from the symptoms, pain, and stress.
• Use quality metrics to measure effective symptom management.

• Following the indications of the technical data sheet of the drug, it is recommended to assess adverse effects and contraindications of the ACE inhibitors and Memantine.
• Individual assessment of the suspension of specific pharmacological treatment is recommended, as the guideline developers have no studies that assess this item, and in the only study where the treatment with donepezil was interrupted, neither cognition nor function returned to the level achieved before the interruption.
• Bearing in mind that patients with vascular dementia usually suffer a high cardiovascular risk, treatment with ACE inhibitors should be assessed individually, paying special attention to how the treatment is managed.
• It is advisable to follow the indications given in the product technical data sheet.
• Start with low doses and slowly reach the minimum effective doses. Preferential use of oral route. Review the dose and the actual treatment need at regular intervals, generally every 3 months.

• Identify and treat any underlying or contributing conditions.
• Monitor the effectiveness and potential side effects of medications given to improve cognitive function or delay cognitive decline.
• Avoid pharmacological restraints.

• Assessment of comorbidity is important in Alzheimer's disease patients, both at the time of diagnosis and throughout the course of illness and should always be considered as a possible cause of behavioral and psychological symptoms of dementia. In patients with Alzheimer's disease, treatment with cholinesterase inhibitors should be considered at the time of diagnosis, taking into account expected therapeutic benefits and potential safety issues.
• Regular patient follow-up, which should include scales like the MMSE, to monitor response to treatment and disease progression, should be an integral part of management.
• Currently, there is insufficient evidence to support the use of other agents, including anti-inflammatory drugs, or statins in the treatment or prevention of Alzheimer's disease.
• Antipsychotics should only be used for moderate or severe behavioral and psychological symptoms of dementia causing significant distress which have either not responded to other treatments (like nonpharmacological measures or cholinesterase inhibitors) or when other treatments are not appropriate.

• Dementia has a profound effect on a patient's ability to participate in his or her own care that must be accounted for in the clinician's treatment plan. Thinking of the patient as "a person with dementia who has multiple comorbidities" is more effective than thinking of the patient has "a person with diabetes, osteoporosis and hypertension who also has dementia." Therefore, the presence of dementia often is the most important thing to know about a patient when making decisions about his or her health care.
• See patient regularly, perhaps every 3 to 6 months. This allows the clinician to: monitor the progression of cognitive and functional impairment and adapt the goals and treatment plan; look for adverse effects of medications and poor adherence to the medication regimen, signs of acute intercurrent problems and the exacerbation of chronic disease; and check on how the caregiver is coping.
• Dementia alters the benefits/burden equation for treating comorbid illness in several ways. First, it reduces life expectancy, making some prevention activities a lower priority. As dementia progresses, standard treatment options carry an increased risk of adverse outcomes.
• Any sudden increase in confusion should prompt an evaluation to identify an underlying acute cause. Medications, infection, constipation, urine retention, pain, myocardial ischemia, dehydration, sleep deprivation and dental disease can be common causes of delirium or acute mental status changes in patients with Alzheimer's disease.
• Good prescribing practice for the patient with dementia requires paying special attention to both the patient's adherence to drug regimens and susceptibility to adverse effects of certain drugs.

• Provision of palliative care and advanced dementia should be guided by a preference for comfort-focused care, not estimated prognosis.
• Conservative measures that may improve oral intake include altering the texture of food and offering finger foods, smaller portions, favorite foods, and nutritional supplements. When feeding problems persist despite conservative measures, we suggest continued oral feeding by hand rather than tube feeding for nutritional support.
• Clinicians should ensure that minimal criteria to suspect an infection are present before initiating testing and treatment, and antimicrobial use should be aligned with patient and family goals of care.
• Chronic daily medications can be discontinued when they no longer have clear benefits for patients with advanced dementia.

• Since many persons have dementia caused by more than 1 condition, medical management for a person with dementia should be based on those diagnoses that are believed to be the predominant contributing causes for that person.
• Physicians should consider the use of medications developed specifically for Alzheimer's disease in persons with dementia caused by other diseases that cause dementia.
• Because of known side effects and drug costs of continuing therapy, discontinuation of medications developed specifically for Alzheimer's disease should be considered and balanced against possible worsening of cognitive function and greater functional impairment.
• Physicians should be sensitive to the special issues associated with early-onset dementia, particularly in regard to loss of employment, insurance, disability benefits, pensions, and access to support services appropriate for that group.

• Potentially harmful drug/disease interactions: Percentage of Medicare members 65 years of age and older who have a diagnosis of dementia and a prescription for tricyclic antidepressants or anticholinergic agents.

• People with dementia who develop noncognitive symptoms or behavior that challenges should be offered a pharmacological intervention in the first instance only if they are severely distressed but there is an immediate risk of harm to the person or others. The assessment and care planning approach, which includes behavioral management, should be followed as soon as possible. If distress or agitation are less severe, the interventions described should be followed before pharmacological intervention is considered.
• People with Alzheimer's disease, vascular dementia or mix dementias with mild to moderate noncognitive symptoms should not be prescribed antipsychotic drugs because of the possible risk of cerebrovascular adverse events and death.
• People with dementia who also have major depressive disorder should be offered antidepressant medication. Treatment should be started by staff with specialist training, who should follow the clinical guideline for depression management in primary and secondary care after a careful risk-benefit assessment.
• Health and social care professionals working with people with dementia and their carers should adopt a palliative care approach. They should consider physical, psychological, social and spiritual needs to maximize the quality of life of the person with dementia and their family.

• A careful evaluation for general medical, psychiatric, environmental, or psychosocial problems that may underlie a behavioral disturbance should be undertaken. If possible and safe, such underlying causes should be treated first. If this does not resolve the symptoms and if they do not cause significant danger or distress to the patient or others, such symptoms are best treated with environmental measures, including reassurance and redirection.
• Depressed mood may respond to improvements in the patient's living situation or to stimulation-oriented treatments. Although evidence for antidepressant efficacy in patients with dementia and depression is mixed, clinical consensus supports a trial of an antidepressant to treat clinically significant, persistent depressed mood.
• Manage co-occurring conditions such as general medical conditions, delirium, and other dementias.
• When using pharmacotherapy in patients with dementia, low starting doses, small increases in dose, and long intervals between dosing governments may be needed, in addition to ensuring that a system is in place that can enhance proper medication adherence.

• The available evidence remains modest for the efficacy of cholinesterase inhibitors for mild to severe Alzheimer's disease and of Memantine for moderate to severe Alzheimer's disease.
• Additional evidence has clarified that the adverse effects of cholinesterase inhibitors when these agents are used on a long-term basis. Such effects include anorexia, weight loss, falls, hip fractures, syncope, bradycardia, and increased use of cardiac pacemakers.
• No new evidence supports the use of other pharmacological agents to prevent or treat cognitive symptoms.
• New evidence indicates that antipsychotics provide weak benefits for the treatment of psychosis and agitation in patients with dementia. Adverse effects of antipsychotics reported in new studies include sedation, metabolic effects, and cognitive impairment.
• New evidence indicates that for many patients with Alzheimer's disease, antipsychotics can be tapered and discontinued without significant signs of withdrawal or return of behavioral symptoms.
• New studies indicate that cholinesterase inhibitors and Memantine have no clinically significant effects on disruptive behaviors.

• Starting a therapy with acetylcholinesterase inhibitors, whose effectiveness on treating symptoms is proven, should be considered at the moment of diagnosis of mild and moderate Alzheimer's disease.
• The use of antidepressant drugs, preferably SSRI, can be useful in the treatment of patients with dementia and depression. Trazodone can be useful in case of agitation.
• Antipsychotic drugs have partial efficacy in the treatment of psychosis and aggressiveness associated with dementia. Their use should be limited to at risk or extremely suffering patients or caregivers, and should be limited if possible in time, because of the potentially severe adverse effects of these drugs. Associations of antipsychotic drugs should be avoided.

• Nurses need to maintain awareness of the effect of pharmacological interventions, carefully review the older adult's medication profiles, and report medications that may contribute to potential delirium.
• Nurses caring for clients with dementia should be knowledgeable about pharmacological interventions, and contribute to the decisions and education regarding the risks and benefits of medication for targeted symptoms, monitor for efficacy and side effects, document response, and advocate for reevaluation and withdrawal of psychotropics after a time period of behavioral stability.

• Family physicians should use pharmacologic and nonpharmacologic approaches to manage cognitive and behavioral problems in dementia.
• Use medications to preserve cognitive and functional ability, minimize behavioral disturbances and slow disease progression.
• Assist with evaluation and treatment of visual and hearing deficits.
• There continues to be mixed evidence for the efficacy of antidepressants to treat depression in patients with dementia.
• New evidence shows inconsistent effects of psychostimulants in treating severe apathy in patients with dementia.

• Most patients with dementia can be assessed and managed adequately by their primary care physicians. Reasons for referral to a geriatrician, geriatric psychiatrist, neurologist, or other health care professional (e.g., neuropsychologist, nurse, nurse practitioner, occupational therapist, physical therapist, psychologist, social worker, other) with the appropriate knowledge and expertise in dementia care include:
  • Continuing uncertainty about the diagnosis.
  • Request by the patient or family for another opinion.
  • Presence of significant depression, especially if there is no response to treatment.
  • Treatment problems or failure with Alzheimer's-specific medications.
  • Need for additional help in patient management (e.g., behavioral problems or functional impairments) or caregiver support.
  • Patients with mild to moderate dementia, when hospitalized should be identified as being at increased risk for delirium. To reduce that risk, they should be offered multicomponent interventions including orienting communication, therapeutic activities, sleep enhancement strategies, exercise and mobilization, provision of vision and hearing aids, or fluids to avoid dehydration.
  • Comorbidities of patients with mild to moderate dementia should be appropriately managed. The management of comorbid conditions may have to be modified in a person with dementia. In general, there should be less reliance on patient self-care and a concomitant increase in the role played by caregivers.
  • Determination of how medications are being consumed and identification of any problems/concerns with medication management, including poor adherence, should be conducted for all patients with mild or moderate dementia. If problems are detected, in particular with adherence, use of compliance aids or the assumption of medication management by another party will be necessary.
  • The use of medications with anticholinergic effects should be minimized in persons with dementia.
  • Alzheimer's-specific medications are viable treatment options for most patients with Alzheimer's disease. Selection of which medication to use should be based on stage of disease or condition, adverse effect profile, ease of use, familiarity, and beliefs. If adverse effects occur, the medication should be discontinued, the dose reduced, or the manner of administration changed. Combinations of
  • Alzheimer's-specific medications can be beneficial. Alzheimer's-specific medications should be discontinued if the patient or proxy decision maker decides to stop, the patient refuses to take the medications or is nonadherent, there is no response, there are intolerable side effects, or comorbidities of the patient make continued use unacceptable risk or futile.
  • For patients with advanced dementia, medical management includes treatment of intercurrent medical conditions (e.g., infections, Parkinsonian symptoms, seizures, pressure ulcers), ameliorating pain, improving nutritional status and optimizing sensory function.

• Ensure open and ongoing communication among the resident, proxy decision maker, family and care team so that all parties have a clear and common understanding of what constitutes optimal end-of-life care for the individual resident.
• During the initial assessment and care planning process, it is important to discuss the resident's preferences regarding end-of-life decisions and any related doctor's orders such as "comfort care only," "do not resuscitate," "do not hospitalize," or "do not intubate." These orders are designed to prevent reviving, hospitalizing or inserting a tube to help the resident breathe when he or she is dying.
• It is important that residents and families consider the following care decisions and the relationship of each of them to the resident's care goals during planning for the end-of-life:
  • Cardiopulmonary resuscitation.
  • Invasive medical procedures and tests (e.g., surgery, blood tests, dialysis).
  • Hospitalization.
  • Use of intensive care units and ventilators.
  • Artificial nutrition/hydration.
  • Use of antibiotics.
  • Use of preventive health screenings, medications and dietary restrictions.

• Obtaining the most current advance directive information and information about a resident's preferences regarding palliative care and funeral arrangements helps ensure that the resident's wishes will be honored.

• To be effective, providers must understand the communication challenges presented by those living with dementia.
• Providers must also consider what, how and when information should be delivered to family and other team members.
• The ability of a person with dementia to understand care choices and make decisions about care varies with the progression of the disease and the type of decision required.
• Ensure open and ongoing communication, among the person, health care decision maker, family and home care team, so that everyone knows the person's choices about end-of-life care and provides the best care.
• Support families when an individual is dying and after death by addressing their need for education about dementia and the dying process. Reassure them about the experiences the person with dementia has while dying.

• Address ethical issues. Facilities should develop policies and procedures or guidelines for managing issues such as attempted sexual activity between 2 cognitively impaired patients or between a cognitively impaired and cognitively intact patient. The facility should have a systematic, consistent process for managing ethical issues and documenting patient wishes. The practitioner should help to define the potential benefits and burdens of treatments for the patient with dementia, clarify the patient's prognosis, and supported decision making by families or surrogates. The practitioner should review the relevance and appropriateness to the patient's overall care various treatment recommendations made by other disciplines or consultants.
• Good evidence exists that artificial nutrition does not materially prolong life or improve quality of life in patients with advanced dementia. Substantial functional decline and recurrent or progressive medical illnesses may indicate that a patient who is not eating is unlikely to obtain any significant or long-term benefit from artificial nutrition and hydration.

• Psychologists recognize the value of constructive feedback, support, education, and maintenance of a therapeutic alliance with the person with possible dementia during the diagnostic evaluation process; providing feedback to the person and the family/caregiver allows the psychologist to assist with differences of opinion, respond to individual questions, and facilitate the interactions between the person and others in his/her support network.
• As part of the evaluation process, psychologists appropriately recommend interventions available to persons with cognitive impairment and their caregivers (e.g., cognitive training, external aids, such as medication dispensers, approaches for managing behavioral symptoms that are consistent with the likely causes of such behaviors in a particular person); and approaches to provide optimal levels of stimulation. Psychologists should discuss therapeutic goals with the person with dementia.

• Prior to the initiation of any psychotropic medication for treating behavioral and psychological symptoms of dementia, physicians, nurses and other clinicians should carefully evaluate the risks versus benefits for each resident and obtain informed consent from the resident or their substitute decision maker prior to commencing treatment.
• With the exception of emergency situations, British Columbia's health care consent law requires that the capable resident or their substitute decision maker when the adult is incapable must provide consent prior to the prescribing and administration of any health care treatment including pharmacological interventions for behavioral and psychological symptoms of dementia.

• Dementia symptoms may be unfamiliar or viewed as part of the aging process, and there may be stigma to mental health issues, resulting in diagnosis delay-provide culturally sensitive patient information on dementia to patients and families.
• Introduce advance care planning early.

• Discuss the diagnosis, progression, treatment choices, and goals of Alzheimer's disease care with the patient and family in a manner consistent with their values, preferences, culture, educational level, and patient's abilities.
• Pay particular attention to the special needs of early-stage patients, involving them in care planning, heeding their opinions and wishes, and referring them to community resources, including the Alzheimer's Association.
• Discuss the patient's need to make care choices at all stages of the disease through the use of advance directives and identification of surrogates for medical and legal decision making.
• Discuss the intensity of care and other end-of-life care decisions with the Alzheimer's disease patient and involved family members while respecting their cultural preferences.
• Include discussion of the importance of basic legal and financial planning as part of the treatment plan as soon as possible after the diagnosis of Alzheimer's disease.

• Educate the patient and family caregiver about the diagnosis and care options.

• Provide care for persons with advanced dementia that is concordant with their values and preferences.

• Counseling before and after cognitive assessment is an essential component of any cognitive evaluation.

• People with mild cognitive impairment and mild dementia should be advised to protect themselves through self-guardianship, or giving special power or writing the advance directive document.
• Any person with dementia who still has sufficient capacity to act should appoint a guardian, foreseeing the possibility of being declared incapable, and adopt any provision referring to their personal care or the administration of their assets, identifying any person who should not be appointed, under any circumstances.
• People with dementia who have lost their self-management capacity should have a legal representative or guardian to protect them, and substitute them.
• People with dementia with reduced decision capacity should name a representative who shall care for their conservatorship, accompanying them, advising them and helping them make decisions.
• People with dementia with reduced decision making capacity should name an administrator for their estate to administer their assets if these were considerable.
• A judicial defender of the person with dementia must be named to cope with urgent situations if a tutor has not been named or when important differences arise between guardian and the ward.

• Provide education for caregivers.
• Explain trajectory of progressive dementia, treatment options and advance directives.
• Encourage and support advance care planning.

• Diagnosis of Alzheimer's disease should be disclosed to the patient (and caregivers as appropriate). Disclosure of diagnosis should be individually tailored. It should be accompanied by information and counseling, and useful contacts such as the Alzheimer's patient organizations. Patients and caregivers should be provided with education and support.
• Driving, medical legal issues, and the need for other support services should be considered.
• If possible, physicians may encourage patients to draw up advance directives containing future treatment and care preferences.
• Realistic expectations for treatment effects of cholinesterase inhibitors and Memantine and potential side effects should be discussed with the patient and caregivers.
• Low dose of atypical agents should be used only after assessment of risk-benefit and full discussion with patient (when capacity allows) and caregiver.

• Clinicians should be prepared to promote compassionate, evidence-based counseling and shared decision making to avoid burdensome care that is of limited clinical benefit and not aligned with preferences.
• Patients with dementia and their families should be informed about what to expect at the end stage of the disease. Formal advance directives and an appointment of a health care proxy should be ascertained prior to the end stage of dementia.

• Health and social care managers should ensure that all staff working with older people in the health, social care and voluntary sectors have access to dementia care training/skill development that is consistent with their roles and responsibilities.
• The experience of the diagnosis of dementia is challenging both for people with dementia and family members and for health care professionals, so health care professionals should make time available to discuss the diagnosis and its implications with the person with dementia and also with family members. Health care professionals should be aware that people with dementia and family members may need ongoing support to cope with the difficulties presented by the diagnosis.
• Following a diagnosis of dementia, health and social care professionals should, unless a person with dementia clearly indicates to the contrary, provide them and their family with written information about: the signs and symptoms of dementia, the course and prognosis of the condition, treatments, local care and support services, support groups, sources of financial and legal advice and advocacy, medical legal issues, including driving, local information sources, including libraries and voluntary organizations. Any advice and information given should be recorded in the notes.
• Health and social care professionals should always seek valid consent from people with dementia. This should entail informing the person of options, and checking that he or she understands, that there is no coercion and that he or she continues to consent over time. If the person lacks the capacity to make a decision, the provisions of the Mental Capacity Act 2005 must be followed.
• Diagnostic disclosure: People who are assessed for the possibility of dementia should be asked if they wish to know the diagnosis and with whom this should be shared.

• Caregiver Education and Support: Percentage of patients, regardless of age, with a diagnosis of dementia whose caregiver(s) were provided with education on dementia disease management and health behavior changes and referred to additional sources for support within a 12-month period.
• Care Plan: Percentage of patients aged 65 years and older who have an advance care plan or surrogate decision maker documented in the medical record or documentation in the medical record that an advance care plan was discussed but the patient did not wish or was not able to name a surrogate decision maker or provide an advance care plan; includes persons with Chronic Kidney Disease, Heart Failure, HIV/AIDS, Parkinson's Disease, Chronic Obstructive Pulmonary Disorder, and Dementia.

• Patients and families should be advised about potential benefits and risks of antipsychotic agents particularly the risk of mortality. Second-generation antipsychotics currently have a black box warning for increased risk of mortality in elderly patients; recent data suggest that first-generation typical agents carry at least a similar risk.
• Risks of driving should be discussed with all patients with dementia and their families, and these discussions should be carefully documented. Discussions should include an exploration of the patient's current driving patterns, transportation needs, and potential alternatives. For patients with dementia who continue to drive, the issue should be raised repeatedly and reassessed over time.

• Expected benefits of treatment should be discussed with patients and caregivers.

• Nurses should determine whom the client has appointed as powers of attorney for personal care, and property and whenever possible include the power of attorney along with the client in decision making, consent, and care planning.
• If there is no power of attorney for personal care, nurses should encourage and facilitate the process for older adults to appoint power of attorney for personal care and to have discussions about end-of-life treatment and wishes while mentally capable.

• Awareness of diagnosis: Increase the proportion of persons with Alzheimer's disease and other dementias, or their caregiver, who are aware of the diagnosis.

• Primary care physicians should communicate appropriate information concerning dementia, including realistic treatment expectations, to patients and their families.
• The process of diagnostic disclosure for a person with cognitive impairment or dementia must begin as soon as the possibility of cognitive impairment is suspected.
• Both the diagnosis of dementia and the disclosure of the diagnosis must be considered processes that provide opportunities for education and discussion.
• The potential for adverse psychological consequences of diagnostic disclosure must be assessed and addressed through education of the patient and the family/caregivers.
• Although each case should be considered individually, in general the diagnosis of dementia should be disclosed to the patient and family in a manner that is consistent with the expressed wishes of the patient. This process should include a discussion of prognosis, diagnostic uncertainty, advance planning, driving issues, treatment options, support groups, and future plans.
• Follow-up plans must be made and discussed at the time of diagnostic disclosure.
• Primary care physicians should be aware of the laws in their jurisdiction about informed consent, assessment of capacity, identification of a surrogate decision maker, and the responsibilities of physicians in these matters.
• While patients with dementia retain capacity, they should be encouraged to update their will and enact both an advance directive and an enduring power of attorney.
• A diagnosis of dementia does not preclude competence to provide informed consent, whether it be for treatment decisions or participation in research. The potential that competency for treatment and research decision making will change over time must be recognized. Such change may require movement from obtaining the patient's ongoing consent to obtaining ongoing assessment. Assent is almost invariably required, and the decision to discontinue treatment, whether it be therapy or research, must always be an option.
• To the best of their ability, clinicians must ensure that the decisions made by proxies are based on the prior attitudes and values of the patient. Proxies have a responsibility to represent the patient, and all parties must recognize the challenges of doing so.

• It is obligatory to protect a person with dementia from seriously harmful consequences, and it is equally obligatory to respect his or her competent decisions. Neither law nor ethics allow interference with the competent person's choices.
• In general, respect for the autonomy, freedom and choice of a person with Alzheimer's disease or related dementia, to the extent possible, is ethically important and the appropriate alternative to unnecessary coercion.
• People with dementia should be allowed to exercise their remaining capacities for choice, consistent with their cultural expectations. Denying this free exercise challenges their independence and dignity.

• The fundamental rights of the person to dignity, participation, autonomy and self-determination must be preserved.

• Provide social engagement.
• Emphasize residual strengths.

• Always attempt self-report regardless of level of cognitive functioning.

• Attempt first to elicit a self-report from patient and, if unable, document why self-report cannot be used. Self-report of pain is often possible in mild to moderate cognitive impairment, but ability to self-report decreases as dementia progresses.

• Services should be provided based on individual preferences, culture, values, lifestyle choices and needs to support his/her unique rhythms of daily living.
• Every person has his/her own meaning of life, authenticity (personality, spirit, and character) history, interests, personal preferences, and needs to continue to experience life at all stages of dementia. The person is not their dementia illness; rather the condition is only 1 aspect of their current status. Personalized practices recognize and support the whole person.
• Interact with the person with dementia in ways that honor and support his or her individual personhood.

• Among the emotion oriented treatments, supportive psychotherapy can be employed to address issues of loss in the early stages of dementia.

• Support programs for caregivers and patients with dementia significantly decreased the odds of institutionalization and improved caregiver well-being.

• Nurses need to establish and maintain a therapeutic supportive relationship with older adults based on the individual's social and psychological aspects.

• Increase social interaction.

• Use a person-centered, culturally sensitive approach to providing care that meets a resident's changing needs and respects his or her preferences regarding end-of-life care.
• Minimize the resident's physical, emotional and spiritual distress, while maximizing comfort and well-being in a manner consistent with an individual's preferences regarding end-of-life care.

• Staffing patterns should ensure that residents with dementia have sufficient assistance to complete their health and personal care routines and to participate in the daily life of the residence.
• Direct care staff need education, support and supervision that empowers them to tailor their care to the needs of residents.
• Staff who understand the prognosis and symptoms of dementia and how this differs from normal aging and reversible forms of dementia are better prepared to care for people with dementia.
• Assure proper nutrition and hydration, given resident preferences and life circumstances.
• Promote mealtimes as pleasant and enjoyable activities where staff have an opportunity to observe and interact with residents.
• Offer many opportunities each day for providing a context with personal meaning, a sense of community, choices and fun.
• Design interactions to do with--not to or for--the resident.
• Respect resident preferences even if the residents prefer solitude.

• Consistent staff assignment and having the same direct care providers at the same time of day creates a more predictable daily routine and can improve the quality of the relationships among direct care providers, people with dementia and their families.
• Provide care that is sensitive to the person's abilities, and maximizes independence and participation in personal care.
• Provide care that takes into account cultural sensitivities around such issues as communication, care delivery and care choices.
• Anticipate changes and plan ahead to provide care that is based on knowledge of the individual's choices, needs and abilities.
• Help the person eat and drink what he or she likes, and provide food that meets dietary needs to promote health and safety.
• Help to make mealtimes pleasant and enjoyable, involve family when the person and family are amenable.
• Provide care that meets the person's changing needs, respects his or her choices about end-of-life care, and adapts to changes in care goals as a person's condition worsens.
• Minimize the person's physical, emotional and spiritual distress while maximizing comfort and well-being.
• Help the person with dementia have and sustain meaningful social relationships.
• Develop trust with the person by showing a sincere interest in the social relationships and activities he or she enjoys.
• Design meaningful activities that match a person's interests, choices and abilities and that providers or family do with--not to or for--the person so that he or she can have the best quality of life possible.
• Encourage daily exercise to increase or maintain physical strength.

• A therapeutic environment should be provided whenever possible. Preventative measures should include:
  • Use sensory aids as appropriate.
  • Foster orientation.
  • Regulate bowel/bladder function.
  • Provide adequate nutrition.
  • Increase supervised mobility.
  • Increase awareness and vision whenever possible.
  • Communicate clearly.

• Manage functional deficits. A restorative nursing program may help to optimize the function of a patient who has impaired cognition and behavior. Practitioners should help to identify patients who are likely to benefit from such interventions and authorize appropriate evaluations and management.

• Anticipate the person's needs instead of waiting for the behavior to occur. Address basic needs at all times.
• Know how to make the person comfortable and communicate this to other team members caring for this individual.
• Empower staff to do whatever makes the person with advanced dementia most comfortable.

• Facilitate regular cognitive, physical, and social activity.

• Use quality metrics to ensure avoidance of burdensome, nonbeneficial treatments (e.g., tube feeding).

• Focus on the strengths of the person living with dementia rather than on what abilities and capabilities have been diminished or lost.
• Care partners should learn the preferences of the person with dementia for bathing, dressing, grooming and other daily activities and provide care based on those preferences.
• Having the same staff members consistently provide care and support for a person with dementia helps to build relationships and knowledge about how to best provide the care and support.
• Movement should be encouraged throughout the stages of dementia. It can be used to maintain and enhance motor functions, increase balance, mobility, strength and stamina, and manage stiffness and atrophy.
• For individuals living with dementia, relationships and belonging are especially important and add familiarity, comfort, meaning, and context to daily living.
• Having meaningful things to do adds purpose and enjoyment in daily life and fosters emotional health and a send of connection with others. Since people have different needs for solitude and socialization, what is purposeful and meaningful for each individual is unique to them.
• Meaningful and engaging things to do throughout the day are essential to support health and well-being. These rhythms of daily life not only provide purpose and structure to the day, but the meaningful activities help to support life roles and functions that are important to preserving value, self-esteem, and confidence, and to identify and create a sense of belonging.
• Many people need to feel a connection to something beyond their own person. This can be through spiritual/religious practices. Spirituality is more diverse than religion as it is not restricted to any specific religious beliefs, institutions, or practices. For many people, religious or spiritual memories and rituals bring a sense of great comfort.

• Cognitive intervention programs, especially those based on reality counseling therapies and cognitive training, must be adapted to the cognitive skills and the emotional tolerance of each patient, to avoid adverse emotional consequences.

• Provide graded assistance as needed with ADLs and IADLs.
• Ensure adequate rest, sleep, fluid, nutrition, elimination, pain control, and comfort measures.
• Maximize functional capacity; maintain mobility and encourage independence as long as possible; provide scheduled toileting and prompted voiding to reduce urinary incontinence; encourage an exercise routine that expends energy and promotes fatigue at bedtime, and establish bedtime routine and rituals.
• Provide appropriate end-of-life care in terminal phase; provide comfort measures including adequate pain management; weigh the benefits/risks of the use of aggressive treatment (e.g., tube feeding, antibiotic therapy).

• Cognitive stimulation or rehabilitation may be considered in patients with mild to moderate Alzheimer's disease. Occupational therapy can improve a patient's functioning and reduce the need for informal care.

• Nurses should know their clients, recognize their retained abilities, understand the impact of the environment, and relate effectively when tailoring and implementing their caregiving strategies.
• In consultation/collaboration with the interdisciplinary team: nurses should determine if a client is capable of personal care, treatment, and property decisions. If the client is incapable, nurses should approach substitute decision makers regarding care issues.

• Establish regular sleep habits.

• Performance skills: the Occupational Therapy practitioner needs to be aware of individual skills on a case-by-case basis.
• Performance patterns are the habits, routines, rituals, and roles in daily activity. Habits become strengths that the person can draw from when he or she is no longer able to remember how to perform. Because habits are automatic, people may engage in an occupation beyond their cognitive ability to do so. A person in the middle and later stages of dementia can function optimally when he or she is able to draw from early learning and long-term memory and replicate skills that are well rehearsed. New learning is challenging with dementia. The person who is unable to learn a new routine may be able to carry out former routines successfully. People with cognitive impairment report that consistency in task demands and stability in their daily environment contributes to decreased stress and anxiety. Part of the evaluation process is to consider the person's former habits, routines, and rituals that were familiar and support occupational performance. The goal for family caregivers is to support habitual behavior and adapt routines for optimal functional performance.

• Provide individualized exercise activities to maintain physical functioning.
• Nonpharmacological approaches to manage sleep disturbances can be effective, but a combination of these approaches is likely to be required. When clinically necessary, pharmacological interventions can be used at the lowest effective dose for the shortest possible time.
• The care and management of patients with dementia from specific cultural groups should take into account the risk of isolation, the importance of culturally appropriate services, and issues that arise in providing caregiver support.
• The goals for management for persons with advanced dementia are to improve quality of life for the patient and caregivers, maintain optimal function and provide maximum comfort.
• Patients with mild to moderate dementia, when hospitalized should be identified as being at increased risk for delirium. To reduce that risk, they should be offered multicomponent interventions including orienting communication, therapeutic activities, sleep enhancement strategies, exercise and mobilization, provision of vision and hearing aids, or fluids to avoid dehydration.

• Family members are an important part of the care team and often derive satisfaction in knowing that they can still help with the care and comfort of their loved ones. To facilitate this, staff may provide suggestions for activities that the family members can engage in with the resident.
• Soliciting input from the proxy decision maker or family regarding care options and development of a care plan helps them know that they are contributing to the well-being of the resident.

• Family members may play a vital role in helping a person with dementia remain at home.
• Assess family caregivers to determine what type of support is needed. Responses to the following will help providers shape care for family caregivers: caregiver's health status, caregivers communication needs, kind of help the family caregiver is providing including how often and how long, tasks the family caregiver would like to continue/discontinue and tasks the caregiver is unsafe or unqualified to handle, support the family caregiver would like to have, caregivers emotional status and additional responsibilities the caregiver has such as childcare and employment.
• Every family needs easy access to a home care team that responds to its needs and questions. Responsive communication can include team meetings that involve family. It can also include assigning a primary nurse or social worker to the person with dementia, and keeping regular contact through home visits, phone calls, or e-mail, text messages or other electronic technologies.
• Whenever possible, a family member should be designated as the primary contact for all members of the home care team. However it is important to recognize that different family members can have different responsibilities.

• Always involve the caregiver and plan on several visits to establish and inform patient/caregiver of diagnosis.

• Accept the caregiver-care recipient dyad as the target of care.

• Identify the primary caregiver and assess the adequacy of family and other support systems, paying particular attention to the caregivers on mental and physical health.

• The use of specific adapted and validated instruments is recommended to assess other aspects that may be affected by the caregiver burden.
• It is recommended for those caregivers who express a significant degree of stress or depression to be referred to their primary care physician or mental health specialist for their assessment and treatment.

• The caregiver of the patient with dementia often has as many needs as the patient with dementia; therefore, a detailed assessment of the caregiver and the caregiving environment is essential.
• Elicit the caregiver perspective of patient function and the level of support provided.
• Evaluate the impact that the patient's cognitive impairment and problem behaviors have on the caregiver (mastery, satisfaction, and burden).
• Evaluate the caregiver's experience and patient-caregiver relationship.
• Respect family systems/dynamics and avoid making judgments; encourage open dialogue.

• Knowledgeable informants (e.g., caregivers) should be asked about typical pain behaviors of the individual.

• Credible information can be obtained from a family member or another person who knows the patient well (e.g., spouse, parent, child, caregiver). Consistent caregivers should be encouraged to actively participate in the assessment of pain. Familiarity with the patient and knowledge of the usual and past behaviors can assist in identifying subtle less obvious changes in behavior that may be indicators of pain presence.

• Clinical history should be supplemented by an informant.
• Several informant-based questionnaires are available and should be used where possible.

• Because dementia gradually degrades a person's ability to participate in his or her own medical care, good care requires the assistance of the care partner (in the early stages) or caregiver (later on as disability increases) who will bring the patient to appointments, participate in the visit, oversee or supervise medication adherence, and serve as a source of information about the patient's progress.
• Identifying and developing a working relationship with the care partner or caregiver is essential to caring for a person with dementia.
• Physicians and other PCP should stress the importance of the caregiver and insist that he or she attend all office visits. They also should offer them ongoing support and look for clues that might suggest that the support the patient is receiving at home may be inadequate or that the caregiver is overburdened.

• Health and social care managers should ensure that the rights of carers to receive an assessment of needs, as set out in the Carers and Disabled Children Act 2000 and the Carers Equal Opportunities Act 2004, are upheld.
• Those carrying out carers assessment should seek to identify any psychological distress and the psychosocial impact on the carer. This should be an ongoing process and should include any period after the person with dementia has entered residential care.
• Care plans for carers of people with dementia should involve a range of tailored interventions. These may consist of multiple components including: individual or group psychoeducation; peer support groups with other carers, tailored to the needs of individuals depending on the stage of dementia of the person being cared for and other characteristics; support and information by telephone and through the Internet; training courses about dementia, services and benefits, and communication and problem-solving in the care of people with dementia; involvement of other family members and the primary care or in family meetings.
• Consideration should be given to involving people with dementia in psychoeducation, support, and other meetings for carers.

• Decisions regarding the need for temporary or permanent placement in a long-term care facility often depend on the degree to which the patient's needs can be met in the community, either by relatives or other caregivers, either in an assisted living facility or at home. The decision to remain at home should be reassessed regularly, with consideration of the patient's clinical status and the continued ability of the patient's caregivers to care for the patient, manage the burden of care, and use available support services.
• As with any psychiatric care, a solid therapeutic alliance is critical to the treatment of a patient with dementia. The care of a patient with dementia requires an alliance with the patient, and with the family and other caregivers. Family members and other caregivers are critical sources of information, as the patient is frequently unable to give a reliable history, particularly as the disease progresses. Because family members are often responsible for implementing and monitoring treatment plans, their own attitudes and behaviors can have a profound effect on the patient, and they often need the treating physician's compassion and concern. For these reasons, treatment is directed to the patient-caregiver system.
• Caregivers should be referred to available books that provide advice and guidance about maximizing the safety of the environment for patients with dementia.
• Provide education and support to patients and families:
  • Educate the patient and family about the illness and available treatments.
  • Refer the family to appropriate sources of care and support.
  • Watch for signs of caregiver distress.
  • Support families during decisions about institutionalization.
  • Advise the family to address financial and legal issues.
• At each stage of the illness, the psychiatrist should be vigilant for cognitive and noncognitive symptoms likely to be present and should help the patient and family anticipate future symptoms. The family may also benefit from reminders to plan for the care likely to be necessary at later stages.

• Times and ways for the training and support of caregivers should be planned.

• Nurses should create partnerships with family members or significant others in the care of clients. This is true for clients who live in either the community or in health care facilities.

• Assess the role and needs of the caregiver.

• Family centered care model: affects all steps of the evaluation and intervention planning process by including family caregivers in obtaining information for the occupational history, setting goals, and exploring strengths and limitations.

• Counseling and case/care management amongst caring family members have positive effects on burden and satisfaction for caregivers of people with dementia.

• The clinician should acknowledge the important role played by the caregiver, work with caregivers and families on an ongoing basis, and schedule regular appointments for patients and caregivers together and alone.
• The clinician should inquire about caregiver information and support needs, caregiver health (both physical and psychiatric), and the effect of the patient's problem behaviors on the caregiver.

• Provide support to families, other residents and staff when an individual is dying and after death has occurred to help them achieve meaningful closure.
• Families of dying residents benefit from ready access to the broader care team and team members who are approachable and responsive to family needs and questions.

• A therapeutic environment should be provided whenever possible. Preventative measures should include:
  • Reassure and educate the family.

• Changes in the person with dementia can be confusing and upsetting to their family and friends and may be disruptive to these relationships. Help family and friends acknowledge the changes and offer them tools for engaging with the person as he or she is today. This approach will enhance well-being for both the person with dementia and the family and friends on whom they increasingly rely.

• Provide caregiver support.
• Teach caregivers the skills of caregiving.

• Carers of people with dementia who experience psychological distress and negative psychological impact should be offered psychological therapy, including cognitive behavioral therapy, conducted by a specialist practitioner.
• Health and social care professionals should ensure that support, such as transport or short break services, is provided for carers to enable them to participate in the interventions.
• Health and social care managers should ensure that carers of people with dementia have access to a comprehensive range of respite/short break services.

• Support programs for caregivers and patients with dementia significantly decreased to the odds of institutionalization and improved caregiver well-being.

• The clinician should offer treatment for physical and psychiatric problems of the caregiver, including psychotherapy or medications as indicated, and refer the caregiver to appropriate specialists.
• The care and management of patients with dementia from specific cultural groups should take into account the risk of isolation, the importance of culturally appropriate services, and issues that arise in providing caregiver support.
• The clinician should assist in recruiting other family members and formal community services to share the caregiving role and refer the caregiver to specialized programs that offer caregiver education, support, and training.

• The behavior and emotional state of people with dementia often are forms of communication because residents may lack the ability to communicate verbally and other ways.
• Staff need initial and ongoing training to identify potential triggers for resident's behavioral and emotional symptoms, such as agitation and depression.
• When staff recognize these triggers, they can use environmental and behavioral strategies to modify the triggers' impact.
• If nonpharmacological treatment options fail after they have been applied consistently, then introducing new medications may be appropriate when residents have severe symptoms or have the potential to harm themselves or others.
• Minimize injuries by avoiding physical restraints.
• Identify the underlying problems or needs that prompt the use of restraints, and address them using restraint-free methods.
• Provide staff with techniques they can use to prevent, reduce and eliminate use of restraints.

• All behaviors, including reactions to daily care, are a form of communication. The direct care provider is responsible for interpreting and responding to behaviors.
• Use gentle caregiving techniques including: warnings before touching a person or beginning care, apologies for causing distress and keeping the person covered and warm.
• Listen to and validate the person's concerns, address those concerns, and provide reassurance.
• Educate direct care providers and family members about methods they can use to prevent, reduce and eliminate restraints.

• Limit the use of chemical and physical restraints to only those situations in which they are absolutely necessary.

• Identify triggers for disruptive behaviors. Do not assume that a behavior is triggered by environmental or other nonmedical factors until alternate causes have been considered. This is especially important when patients are newly admitted, have recently been hospitalized, or have a significant change of condition.

• Consider the person's physical, intellectual, emotional, capabilities, and environmental and social factors to understand his/her behaviors.
• Individualize interventions based on assessment. Use nonpharmacological interventions before turning to pharmacological interventions, and if medications are medically indicated, continue using nonpharmacological, person-centered approaches.
• Successful management of behavioral and psychological symptoms of dementia require physicians, nurses, other clinicians and all health care providers to understand the resident's needs behind the dementia-related behaviors, rather than attempt to control or extinguish them.
• Make adjustments in the understanding of what can influence or trigger behaviors, and implement approaches to care that are person-centered and tailored to the individual with an emphasis on the patient's remaining abilities and strengths.
• Consider the multifactorial nature of behavioral and psychological symptoms of dementia and that not all behaviors are strictly responsive to stimuli but rather some may be related to neurochemical changes in the brain, which can contribute to behavioral presentations along with environmental press.
• It is important for the interdisciplinary team to identify the triggers of the behavior to initiate preventative measures and appropriate interventions.
• By using the ABC model to understand behaviors in terms of antecedents, behavior and the consequences, it is possible to affect change in some behaviors by manipulating triggers in the physical or social environment, or altering responses to the behavior that perpetuate, rather than using a pharmacological intervention.
• There is some evidence that individualized treatments and approaches that combined pharmacological and nonpharmacological interventions can lead to a significant reduction in agitation.
• All interventions should be based on an approach that assesses the person's behaviors comprehensively, implements person-centered strategies to mitigate antecedents and consequences, evaluates and documents outcomes, prevents recurrence and focuses on quality improvement.

• Treat behavioral symptoms and mood disorders using nonpharmacologic approaches, such as environmental modification, task simplification, appropriate activities etc.
• If nonpharmacological approaches prove unsuccessful, then use medications, targeted to specific behaviors, if clinically indicated. Note that side effects may be serious and significant.

• Regularly assess the patient for problem behaviors and train the caregiver in identifying and managing those behaviors.

• Behaviors are often expressions of unmet needs, such as pain, hunger, thirst, boredom, loneliness, or an underlying medical condition that the person with dementia is challenged to communicate to a care partner or to address him or herself.
  • The alternative to treating behavioral symptoms with medications is to determine the root cause of the behavior and then address the cause with the appropriate person-centered strategies. A personalized approach yields far better results from a humanistic context, carries less medical risk for the person with dementia, and promotes well-being.
  • Many people with dementia have a lifetime of experiences being creating and making creative things such as paintings, sculpture, music, photograph, etc. For persons living with dementia with considerable communication challenges, the symbolic and emotional language of the arts provides a way to express themselves without frustration, have meaning, and connect with others. Providing opportunities for them to express creative and artistic interests can help increase their feelings of self-identify, worth, purpose, and self-confidence.
  • Music that is perceived as familiar and pleasant by the listener has been found to override confusing stimuli by providing a comforting auditory environment that can decrease distress, evoke positive feelings, and create a sense of meaningful connection with others. Music can be used to introduce a sense of familiarity into a new environment or to maximize familiarity in an existing environment.
  • Beneficial touch can take many forms, including massage, therapeutic touch, and Reiki. Caring touch transmits connection and compassion.

• It must be taken into account that mental health services carry out an essential role in the care of people with dementia, as they contribute to the diagnosis, the treatment and hospital care if severe behavioral and psychological symptoms of dementia appear. They provide coordinated, comprehensive and multidisciplinary care.

• Address behavioral issues:
  • Identify environmental triggers; medical conditions, caregiver-patient conflict that may be causing the behavior.
  • Define the target symptom (i.e., agitation, aggression, wandering and pharmacological (psychotropics) and nonpharmacological (manage affect, limit stimuli, respect space, distract, redirect) approaches.
  • Provide reassurance.
• Refer to appropriate mental health care professionals as necessary.
• Avoid use of physical restraints.

• Management of behavioral and psychological symptoms of dementia should begin with a careful search for triggers and causative factors (i.e., physical illness). Where possible, initial treatment should be nonpharmacological.

• Nonpharmacologic interventions for agitation and aggression in dementia include recognition and management of potentiating factors (medical, psychiatric, medications, environment).
• Nonpharmacologic treatment should be considered before drug therapy in people with dementia who have agitation or aggression, because the potential benefit of all antipsychotic medications must be weighed against their substantial risk (stroke and mortality).
• Antipsychotic medications should be considered for severe agitation, aggression, and psychosis with dementia where there is risk of harm to the patient or others.
  • A trial of antidepressant medications should be considered if the patient has an inadequate response to nonpharmacologic interventions or has a major depressive disorder.

• People with dementia who develop noncognitive symptoms that cause them significant distress or who develop behavioral challenges should be offered an assessment at an early opportunity to establish the likely factors that may generate, aggravate or improve such behavior. The assessment should be comprehensive and include: the person's health, depression, possible undetected pain or discomfort, side effects of medication, individual biography, including religious beliefs and spiritual and cultural identity, psychosocial factors, physical environmental factors, and behavioral and functional analysis conducted by professionals with specific skills, in conjunction with carers and care workers.
• Individually tailored care plans that help carers and staff address the behavioral challenges should be developed, recorded in the notes and reviewed regularly. The frequency of the review should be agreed upon by the carers and staff involved and written in the notes.
• People with mild to moderate dementia of all types should be given the opportunity to participate in a structured group cognitive stimulation program. This should be commissioned and provided by a range of health and social care staff with appropriate training and supervision, and offered irrespective of any drug prescribed for the treatment of cognitive symptoms of dementia.
• For people with all types and severity's of dementia who have comorbid agitation, consideration should be given to providing access to interventions tailored to the person's preferences, skills and abilities. Because people may respond better to 1 treatment than another, the response to each modality should be monitored and the care plan adapted accordingly.
• Health and social care staff who care for people with dementia should identify, monitor and address environmental, physical health and psychosocial factors that may increase the likelihood of behavioral challenges, especially violence and aggression, and the risk of harm to self or others. These factors include: overcrowding, lack of privacy, lack of activities, inadequate staff attention, poor communication between the person with dementia and staff, conflicts between staff and carers, and weak clinical leadership.
• Health and social care staff should be trained to anticipate behavioral challenges and how to manage violence, aggression and extreme agitation, including de-escalation techniques and methods of physical restraint.
• Violent behavior should be managed without the prescription of high doses or combinations of drugs, especially if the person with dementia is elderly or frail. The lowest effective dose should be used.
• Drugs for behavioral control should be used with caution, particularly if the person with dementia has been restrained, because of the following risks: loss of consciousness instead of sedation; oversedation with loss of alertness; damage to the relationship between the person with dementia, their carers and the health and social care team; specific issues related to age and physical and mental health.
• People with dementia who have received involuntary sedation and their carers should be offered the opportunity to discuss their experiences and be provided with a clear explanation of the decision to use urgent sedation. This should be documented in their notes.
• A range of tailored interventions, such as reminiscence therapy, multisensory stimulation, animal assisted therapy and exercise, should be available for people with dementia who have depression or anxiety.

• Percentage of short-stay residents who are newly administered antipsychotic medications.
• Percent of long-stay residents who got an antipsychotic medication.

• Management of Neuropsychiatric Symptoms: Percentage of patients, regardless of age, with a diagnosis of dementia who have 1 or more neuropsychiatric symptoms who received or were recommended to receive an intervention for neuropsychiatric symptoms within a 12-month period.

• In addition to the general psychosocial interventions subsumed under psychiatric management, a number of specific interventions are appropriate for some patients. Few of these treatments have been subjected to double-blind randomized evaluation, but some research, along with clinical practice, supports their effectiveness.
  • Behavior oriented treatments are used to identify the antecedents and consequences of problem behaviors and attempt to reduce the frequency of behaviors by directing changes in the environment that alter those antecedents and consequences. Behavioral approaches have not been subjected to large randomized clinical trials but are supported by small trials and case studies and are in widespread clinical use.
  • Stimulation-oriented treatments, such as recreational activity, art therapy, music therapy, and pet therapy, along with other formal and informal means of maximizing pleasurable activities for patients, have modest support from clinical trials for improving behavior, mood, and to a lesser extent, function. Common sense supports their use as part of the humane care of patients.
  • Reminiscence therapy has some modest research support for improvement of mood and behavior; validation therapy and sensory integration have less research support; none of these modalities has been subjected to rigorous testing.
  • Cognition-oriented treatments, such as reality orientation, cognitive retraining, and skills training focused on specific cognitive deficits, are unlikely to have a persistent benefit and have been associated with frustration in some patients.
• Sleep disturbances are common in patients with dementia. Interventions include maintaining daytime activities and giving careful attention to sleep hygiene. Pharmacological intervention could be considered when other approaches of failed.
• Care should be organized to meet the needs of patients in residential care/nursing home care, including those with behavioral problems. Employing staff with knowledge and experience concerning dementia and the management of difficult behavior is important.
• A multimodal approach is often use in treatment, combining for instance, behavioral and psychopharmacological interventions is appropriate and available. The site of treatment for an individual with dementia is determined by the need to provide safe and effective treatment in the least restrictive setting.

• The first line of treatment for psychological and behavioral disorders is nonpharmacological, because of the potentially severe adverse effects caused by pharmacological treatments.

• Nurses have a role in the prevention, identification and implementation of delirium care approaches to minimize disruptive behaviors of the person and provide a safe environment. Further, it is recommended that restraints should only be used as a last resort to prevent harm to self and others.
• Nurses caring for clients with dementia should be knowledgeable about nonpharmacological interventions for managing behavior to promote physical and psychological well-being.

• Nonpharmacologic interventions should be used to manage behavioral symptoms.
• Avoid situations that agitate or frighten the person with dementia.
• Redirect and refocus the person with dementia.
• Eliminate sources of conflict and frustration.

• Antipsychotic medications, conventional and atypical agents, may be utilized in clinical practice for aggression, psychosis, and agitation and SSRIs for mood and behavioral disorders, however, there is little evidence to guide practice.

• The management of behavioral and psychological symptoms of dementia should include careful documentation of the behaviors, a search for potential triggers, recording of the consequences of the behaviors, an evaluation to rule out treatable or contributory causes, and consideration of the safety of the patient, the caregiver, and others in their environment.
• Nonpharmacological treatments should be used first. Some patients with behavioral and psychological symptoms may benefit from the following: music, Snoezelen, bright light therapy, reminiscence therapy, validation therapy, aroma therapy, and massage and touch therapy.
• Pharmacological treatments should be initiated only after consideration, and usually a trial, of nonpharmacological interventions. The medications should be started at a low dose and then titrated carefully based on the patient's response and the presence of adverse effects.
• If the patient's behaviors are causing significant caregiver distress, the clinician should refer the caregiver and the patient to specialized dementia services that can offer treatment to the patient and assist the caregiver in modifying his or her interactions with the patient.
• Community-based programs that may be effective for behavioral and psychological symptoms include adult day care; support groups that focus on management of such symptoms; in-home systematic, comprehensive support by a health care provider with advanced training in dementia care over an extended period; and in-home psychoeducational interventions that teach caregivers how to manage behavioral problems.
• Depression should be diagnosed promptly when patients with dementia exhibit behavioral symptoms, weight and sleep changes, sadness, crying, suicidal statements, or excessive guilt.
• Depression should be treated nonpharmacologically first. If there is an inadequate response, antidepressants should be considered.

• Prevent unsafe wandering and exit seeking.
• Promote safety and preserve mobility by reducing risk of falls and fall-related injuries.

• Encourage safety and maintain a person's ability to move within a living space by decreasing the risk of falls and related injuries.
• Minimize fall-related injuries by avoiding physical restraints, such as a chair that a person cannot leave.
• Be prepared to respond if an unsafe wandering event occurs.
• Additional Special Topics:
  • Considerations for Those Who Live Alone:
    • Always introduce yourself and mention the name of a family member or friend to help the person understand why you are there.
    • Allow sufficient time to build trust.
    • If the person is suspicious, a call from the agency (to confirm that the provider is there to help) or from a family member (to verify that it is all right to let the provider in) may be enough to gain entrance.
    • If the person will not open the door, sometimes leaving and attempting to visit again later the same day (or another day) is an effective approach.
    • Build rapport by learning about the person's interests, history, favorite memories, family and friends.
    • Monitor food and fluid intake.
    • Check for fire and other safety risks as part of every visit, including food left cooking on the stove, evidence of small fires, burns on the person or on furniture, and frayed or loose wires.
    • Provide support to help the person with dementia maintain as much independence as possible.
    • Anticipate and avoid crisis situations.
  • Elder Abuse and Neglect:
    • Situations of abuse and neglect are some of the more difficult and complicated situations involving people with dementia. Persons with dementia may have difficulty speaking up about or noticing abusive or neglectful situations. It is important to use communication techniques to de-escalate the situation and to intervene appropriately, including making a report of the elder abuse or neglect.
    • Sometimes persons with dementia neglect to their own care, which can lead to illness or injury. Self-neglect can include behaviors or consequences such as hoarding, failure to take medications or get medical treatment when sick, poor hygiene and housekeeping, not wearing the right clothes for the weather, dehydration and malnutrition, eviction notices, failing to pay bills and utility shutoffs.
  • Emergency Preparedness:
    • When people with dementia, who may already be scared or confused, are involved in an emergency situation, the response may be magnified or inappropriate. Strong communication skills may be the most important tool to keep the person safe from harm.
    • Encourage family members to make an emergency kit.
    • During an emergency, remember to remain calm. People with dementia are especially vulnerable to chaos and emotional trauma; they will react to the providers emotional response.
    • Remember that the individual has limited ability to understand directions and may forget them.
    • Emergency situations may cause agitation, frustration, and feelings of being overwhelmed.
    • Emergency situations often include a change in environment, and this can lead to wandering. Individuals should be enrolled in Medic Alert^® + Alzheimers Association Safe Return^®.
    • Make sure people other than the primary caregiver have copies of the person with dementias medical history, medications, physician information and family contacts.

• Monitor for evidence and report all suspicions of abuse, as required by law.

• People suffering abuse must be informed, respecting their rights to confidentiality, to support for their basic needs, preservation of their social relationships.
• If there is a probable suspicion of abuse, the health personnel must activate the judicial resources that permit the defense of the victim of abuse. If there are physical injuries, a judicial report of injuries will be drafted. If there are no injuries or other acute contingencies, the public prosecutor will be informed.

• Ensure a safe environment.
• Eliminate any environmental hazards and modify the environment to enhance safety.

• Counseling Regarding Safety Concerns: Percentage of patients, regardless of age, with a diagnosis of dementia or their caregiver(s) who were counseled or referred for counseling regarding safety concerns within a 12-month period.
• Counseling Regarding Risks of Driving: Percentage of patients, regardless of age, with a diagnosis of dementia or their caregiver(s) who were counseled regarding the risks of driving and the alternatives to driving at least once within a 12-month period.

• Nurses must initiate prompt attention for clients exhibiting suicidal ideation or intent to harm others.

• Assessment of driving ability should be made after diagnosis with particular attention paid to visual-spatial, visual perceptual, and executive abilities.

• Clinicians should counsel persons with a progressive dementia and their families that giving up driving will be an inevitable consequence. Strategies to ease this transition should occur early in the clinical course of the condition. The driving ability of persons in earlier stages of dementia should be tested on an individual basis. For persons deemed safe to drive, reassessment of their ability to drive should occur at least every 6-12 months.

• The physical environment can encourage and support independence while promoting safety.
• The optimal environment feels comfortable and familiar, as a home would, rather than a hospital. The environment should be less about physical structures and more about the feeling inspired by the quality of the place.
• Providing easy, safe and secure access to the outdoors while maintaining control over unauthorized exiting enhances the environment.
• Encourage, support, and maintain a resident's mobility and choice, enabling him or her to move about safely and independently.

• A comfortable home environment can involve adjusting room temperature, providing supportive seating, eliminating glare, reducing noise levels and offering enjoyable activities, such as listening to music or reading.

• A therapeutic environment should be provided whenever possible. Preventative measures should include:
  • Provide appropriate sensory stimulation such as quiet room, adequate light, noise reduction.
  • Foster familiarity such as encourage family/friends to stay at bedside, bring familiar objects from home, minimize relocations.
  • Communicate clearly.

• Optimize the patient's function and quality of life utilizing specialized environment, trained caregiver staff, and activity programs and special care units.

• Create a homelike environment and support tactile, acoustic, olfactory, visual and thermal stimulations.

• Person-centered environments are multifaceted and need to incorporate the physical and social-emotional dimensions. The attention to and interaction of effective design, indoor and outdoor space, colors, light, sound, furniture, and furnishings blend to create a warm, comfortable, orienting, safe place to be.
• Support relationships in the work environment by ensuring that staff have time to spend with residents/clients to form, nurture, and maintain relationships.
• The physical and social environment in all care settings can have a significant impact on the overall well-being and quality of life for people who have dementia. The goal of positive environments is to enable them to achieve maximum functioning, comfort, functionality, safety, and well-being. They can experience a reduced stress threshold to environmental and sensory stimulation. For instance, noise and light levels and other forms of sensory stimulation can cause unintended negative outcomes. There should be an effective physical and social environment.
• Everyday social interactions, including brief positive interactions with casual acquaintances and caregivers, foster a sense of well-being. Laughing, singing or simply being with others can exert a calming or energizing influence. Knowing that one is part of a social community larger than oneself can provide a reassuring context. Social interactions may also be too stimulating at times, and being alone may be what is needed for a person to recoup his or her sense of self.
• Exposure to light has been shown to increase total nocturnal sleep time, decrease daytime napping, reduce behavioral outburst and increase stability of rest-activity rhythms. Persons with dementia can have particular visual deficits such as difficulty distinguishing color, reduced depth perception, and reduced sensitivity to contrast because of diminished cognitive ability to decode information. Being exposed to sufficient light can boost mood. Avoid bright sunlight, slated sunlight through windows or poorly position lighting, which can cause glare, especially if it reflects off highly polished floors and table tops, and glossy walls.
• Being outdoors and experiencing nature can provide pleasurable things to do (e.g., gardening, watching birds, walking). Besides the physical exercise benefit, for some, the outdoors can help them feel a spiritual connection. Exposure to natural sunlight also helps to regulate a body's circadian rhythm and sleep/wake cycles.
• Environmental noise and sound can create stress for persons with dementia. Background noise from phones, machines, traffic, television and radio can cause auditory overstimulation resulting in agitation. Noise can disturb rest, relaxation and sleep. It is important to be mindful of the effect of environmental noise on the person with dementia.

• Ensure a therapeutic environment:
  • Utilize patient identifiers (name tags); medical alert systems and bracelets, locks, and wander guard.
  • Provide environmental cues or sensory aids that facilitate cognition.
  • Ensure a therapeutic environment: provide an environment that is modestly stimulating, avoiding overstimulation that can cause agitation and increase confusion and understimulation that can cause sensory deprivation and withdrawal.
  • Maintain consistency in caregivers and approaches.

• Other aspects of the pain experience should also be evaluated including environmental factors, psychological functioning and social environment.

• Available research does not conclusively show which psychosocial interventions work best for which service setting, specific behavior, disease stage, or caregiver and patient profile.
• Additional evidence suggests the value of psychosocial interventions to improve or maintain cognition, function, adaptive behavior, and quality of life but does not demonstrate whether any specific psychosocial intervention is more effective than another.

• Nurses need to identify, reduce, or eliminate environmental factors that may contribute to delirium.

• Ensure a calm and predictable environment.
• Remove environmental stressors.
• Ensure a safe environment.

• Physical environment: natural and built nonhuman environment is a key area of evaluation for Occupational Therapy that has the potential to affect interventions and management of the care of a person with Alzheimer's disease. Environments include the primary living space in places that the person frequents in day-to-day activities. Aging in place means that the environment can be adapted to provide the precautionary supports for safety and independence.
• Social environment: includes people in the client's life who are able to provide supports in daily living activities. Evaluating the social supports is accomplished through interview of the client and family members. It is important to know who the primary caregiver and decision maker and what responsibilities that person is willing to accept. The social environment includes both paid (formal) and unpaid (informal) supports. Beyond family members, friends or neighbors also may be willing to provide assistance with weekly or daily tasks.
• Cultural context: occupational therapy evaluations include information gathered through interview about cultural influences on customs, beliefs, activity patterns, behavior standards, and expectations to design a culturally sensitive intervention. Caregiving is considered a cultural activity, with caregiving outcomes and experiences differing for ethnic groups.
• Personal context: the personal context includes age, gender, educational level, socioeconomic level, marital status, and family composition and should be part of the information obtained in the occupational profile. Alzheimer's disease is an age-related disease in that the greater majority of people in the early to middle stages of the disease or in their later years. Younger onset poses a particular challenge because decisions regarding workforce involvement are emotional and affect self-worth.
• Temporal context: the temporal context refers to the "experience of time shaped by engagement in occupations." Information about circadian rhythms (a measure of core body temperature and motor activity) as part of the initial interview and an occupational therapy evaluation because of the prevalence of "sundowners syndrome" in people with Alzheimer's disease. Altered sleep-wake cycles occur in the middle stages of the disease. Altered sleep-wake cycles occur when daytime becomes confused with nighttime.
• Virtual (technology for home monitoring) context: defined as a simulated environment that uses communication technologies in the absence of human presence, can keep the person safe within his or her own home or in a residential facility. An interview can focus on information about behavioral issues related to wandering were exiting safe areas or potentially hazardous activities that require monitoring.

• When residents choose hospice care, effective staff training, care coordination and communication between the nursing home or assisted living residents and the hospice service help ensure the provision of high-quality end-of-life care.

• Assess the need for a transition and care by considering safety, health, and care needs.
• When a person is discharged from the hospital or nursing home, the person with dementia (whenever possible) and the family caregiver need an opportunity to participate in the planning and know the reason for the discharge.
• At the time of discharge, the person with dementia and family caregiver need a clear understanding of the discharge plan and care instructions.
• In addition, the process of medication reconciliation should be performed to ensure that all medications are current and necessary and to minimize the potential for drug interaction problems.

• Harmonize documentation and tracking of level of functional and cognitive status across care settings.
• Use quality metrics to measure burdensome, nonbeneficial transitions.

• Preventable Hospitalization: Reduce the proportion of preventable hospitalizations in persons with diagnosed Alzheimer's disease and other dementias.

• Hospital transfers should be avoided unless clearly needed to achieve the desired goals of care.

• Understand the needs of family and other care team members, and schedule and provide access to respite care services when they need to leave the home.

• Community supports may not provide culturally appropriate care, resulting in lack of adoption of the services and increase in caregiver stress.

• Referral to early-stage groups or adult day services for appropriate structured activities, such as physical exercise and recreation.
• Referral to social service agencies or support organizations, including the Alzheimer's Association's Medic Alert + Safe Return^® program for patients who may wander.
• Connect patient and caregiver to support organizations for linguistically and culturally appropriate educational materials and referrals to community resources, support groups, legal counseling, respite care, consultation on care needs and options, and financial resources.

• Refer the patient to relevant community support services.

• Provide access to experienced professionals.
• Integrate community resources into the plan of care to meet the needs for patient and caregiver information.
• Identify and facilitate both formal (e.g., Alzheimer's associations, respite care, specialized long-term care) and information (e.g., churches, neighbors, extended family/friends) support systems.
• Community resources for education and support are accessed and utilized by the patient or caregivers.

• Refer to community resources and clinical trials, depending on the diagnosis.
• Community resources should include the local Area Agency on Aging, the local chapter of the Alzheimer's Association, state Aging and Disability Resource Centers, and, as appropriate, organizations representing different causes of dementia, such as Parkinson's disease and frontotemporal dementia.

• When available, referral to hospice or specialized palliative care services should be considered in the care plan of patients with advanced dementia.

• Physicians should be sensitive to the special issues associated with early-onset dementia, particularly in regard to loss of employment, insurance, disability benefits, pensions, and access to support services appropriate for that group.

• Respite/short break care of any sort should be characterized by meaningful and therapeutic activity tailored to the person with dementia and provided in an environment that meets their needs. Providing this in the person's own home should be considered whenever possible.

• A referral to the local chapter of the Alzheimer's Association or to a social worker or another individual knowledgeable about local resources, treatment centers, and Medicaid laws can be important in helping families find local treatment options that fit their needs and budget.

• Refer people with dementias and family caregivers to social service agencies and support resources, such as the Alzheimer's Association.

• A dementia diagnosis mandates an inquiry to the community for available public health care support programs.

• All patients with dementia and their families who consent should be referred to the local chapter of the Alzheimer Society.
• Primary care physicians should be aware of the resources available for the care of those with dementia in their community and make appropriate referrals to them.

• When more than 1 agency serves a person, coordination of care, interagency coordination agreements and communication are important.

• Specialized medical care for persons with advanced dementia requires a team of doctors, nurses and other specialists who work with a person's other doctors to provide an extra layer of support.

• To optimize the comprehensive treatment of dementia, it is recommended that a there be referral, admission and discharge criteria for each health care resource.

• Health and social care managers should coordinate and integrate working across all agencies involved in the treatment and care of people with dementia and their carers, including jointly agreeing written policies and procedures. Joint planning should include local service users and carers to highlight and address problems specific to each locality.
• Care managers and care coordinators should ensure the coordinated delivery of health and social care services for people with dementia. This should involve:
  • A combined care plan agreed by health and social services that takes into account the changing needs of the person with dementia and his or her carers.
  • Assignment of named health or social care staff to operate the care plan.
  • Endorsement of the care plan by the person with dementia or carers.
  • Formal reviews of the care plan, at a frequency agreed between professionals involved in the person with dementia or carers and recorded in the notes.
• Health and social care managers should coordinate and integrate working across all agencies involved in the treatment and care of people with dementia and their carers, including jointly agreeing to written policies and procedures. Joint planning should include local service users and carers to highlight and address problems specific to each locality.
• Health and social care professionals should ensure that people with dementia and their carers are given up to date information on local arrangements including interagency working for health and social care, including the independent and voluntary sectors, and how to access such services.

• The appropriate level of care may change over time and patience often moved from 1 level of care to another during the course of dementia. If available, consultation with a social worker or geriatric case manager may be beneficial to assess the current support system and facilitate referrals to additional services.

• Nurses need to facilitate creative client/family/community partnerships to ensure quality care that is individualized for the older client with depression.
• Nurses should initiate prompt consultation to specialized services.

• Physicians play a key role in coordination the support network of nurse practitioners, physician assistance, social workers and medical assistants.

• Referral to occupational therapy is appropriate:
  • In the early stages of dementia if cognitive limitations are barriers to participation in daily living skills, social activities, leisure interests, or work in volunteer activities.
  • In the middle stages of dementia to determine service needs such as home health assistance, memory care or day service programs or caregiver respite support.
  • In later stages of the disease to resolve barriers to performance and self-care or to manage challenging behavior such as agitation, aggression, disruptive vocalizations, wandering, etc.

• Primary care physicians should be aware of the resources available for the care of those with dementia in their community and make appropriate referrals to them.

Vickrey, B.G., Mittman, B.S., Connor, K.I., Pearson, M.L., Della Penna, R.D., Ganiats, T.G., DeMonte, R.W., Chodosh, J., Cui, X., Vassar, S., Duan, N., & Lee, M. (2006). The effect of a disease management intervention on quality and outcomes of dementia care: A randomized, controlled trial. Annals of Internal Medicine, 145(10), 713-726.

ACCESSwas designed to enable 6 health care and social service organizations in San Diego to provide coordinated medical care and community support. Key components of the model include a steering committee to determine care goals and care coordination protocols; care managers; targeted provider education; and a web-based communication and decision support system. The steering committee developed 23 quality dementia care guidelines.

Primary care clinics

Judge, K.S., Yarry, S.J., Looman, W.J., & Bass, D.M. (2013). Improved strain and psychosocial outcomes for caregivers of individuals with dementia: Findings from Project ANSWERS. Gerontologist, 53(2), 280-292.

The Acquiring New Skills (ANSWERS) protocol was designed to focus both on the person with dementia and his or her caregiver, with an aim to reduce strain and psychosocial outcomes for dyads. The program included 6, 90-minute counseling sessions conducted by an intervention specialist. The sessions were designed to cover topics such as education on dementia and caregiving strategies, strategies to improve communication between the dyads, training to better manage behavioral and memory-related issues, and education on the importance of physical and mental activity for the dyads. Following the first introductory session, the dyads were given an opportunity to complete a strength-based inventory. The outputs from the inventory were used as a reference guide for the following sessions.

90-minute sessions

Setting unclear

Gitlin, L.N., Winter, L., Dennis, M.P., Hodgson, N., & Hauck, W.W. (2010). Targeting and managing behavioral symptoms in individuals with dementia: A randomized trial of a nonpharmacological intervention. Journal of the American Geriatrics Society, 58(8), 1465-1474.

The Advanced Caregiver Training (ACT) is designed to improve caregivers' ability to recognize problem behaviors and to manage them effectively. The intervention tracks the problem behaviors linked to 3 main triggers: patient based, caregiver based, and environment based. Target outcomes include frequency of targeted problem behaviors and caregiver's upset behavior and confidence level of managing caregiving tasks. The program is conducted in 2 phases. The main phase of the program runs over 16 weeks and includes up to 9 occupational therapy sessions and 2 nursing sessions. Using standardized checklists, the occupational therapists work with the caregiver to review the problem areas and discuss strategies to improve patient caregiver communication, coping strategies, and environmental modifications. The nursing sessions include education on common medical conditions that may be associated with behavioral problems. The maintenance phase includes 3 contacts with an occupational therapist aimed to reinforce the strategies discussed in the main phase.

Home-based, in-person, telephone

Chapman, D.G., & Toseland, R.W. (2007). Effectiveness of advanced illness care teams for nursing home residents with dementia. Social Work, 52(4), 321-329.

This study evaluated the effectiveness of Advanced Illness Care Teams (AICTs) for nursing home residents with advanced dementia. AICTs included members from various disciplines including medicine, nursing, social work, psychology, physical and occupational therapy, and nutrition. The AICTs used a holistic approach that focused on 4 domains: (1) medical; (2) meaningful activities; (3) psychological; and (4) behavioral. The authors recruited 118 residents in 2 nursing homes for this study and randomly assigned them to AICTs or to usual care. This is 1 of a few studies to examine the effectiveness of team care on the health and well-being of nursing home residents with advanced dementia.

Nursing home

Tan, Z., Jennings, L., & Reuben, D. (2014). Coordinated care management for dementia in a large academic health system. Health Affairs, 33(4), 619-625.

The Alzheimer's and Dementia Care (ADC) Program seeks to improve dementia care through support and training for caregivers, improved care transitions, and linkages to community-based resources. A key component of this model is the dementia care manager, a geriatric nurse practitioner who provides in-depth assessment, coordination of care with the medical treatment team, and referral to community resources. The electronic medical record system is designed to alert the dementia care manager when a patient is treated in a UCLA health facility. Patients and caregivers are asked to contact the dementia care manager with changes in their status such as symptoms, caregiver stress, or hospice enrollment. Formalized partnerships with other community organizations enable referral for additional supportive services.

Community-based resources

Coon, D.W., Thompson, L., Steffen, A., Sorocco, K., & Gallagher-Thompson, D. (2003). Anger and depression management: Psychoeducational skill training interventions for women caregivers of a relative with dementia. Gerontologist, 43(5), 678-689.

This study includes discussion on 2 psychoeducational skill training interventions: anger management and depression management. The study examines the impact of these interventions on caregivers' outcomes, such as anger-hostility, depression, use of coping strategies, and perceived self-efficacy for caregiving. Both interventions include 2-hour workshops over 8 consecutive weeks. In addition, 2 skill reinforcement sessions were conducted at the end of each month.

Small group meetings in a community setting

Bellantonio, S., Kenny, A.M., Fortinsky, R.H., Kleppinger, A., Robison, J., Gruman, C., Kulldorff, M., & Trella, P.M. (2008). Efficacy of a geriatrics team intervention for residents in dementia-specific assisted living facilities: Effect on unanticipated transitions. Journal of the American Geriatrics Society, 56, 523-528.

The intervention is designed to minimize transitions out of assisted living for residents with dementia. Four multidisciplinary assessments conducted by a geriatrician, geriatrics advanced practice nurse, physical therapist, dietitian, and social worker during the first 9 months that an older adult with dementia was living in an assisted living facility in Connecticut. The categories for assessment included medical, cognitive, functional, and nutritional status and issues related psychosocial adjustment and long-term planning. The assessment was conducted at 7, 30, 120, and 320 days. The team met bimonthly to discuss assessments and provide recommendations to the primary care physician, facility director, and families. Team also provided in-person or phone consultation with facility staff through the study.

Assisted living facilities

Teri, L., Logsdon, R.G., Uomoto, J., & McCurry, S.M. (1997). Behavioral treatment of depression in dementia patients: A controlled clinical trial. Journals of Gerontology Series B: Psychological Sciences & Social Sciences, 52(4), P159-P166.

This study evaluates 2 nonpharmacological treatments aimed at treatment of depression in patients with dementia. The first program aims to reduce depression among patients by increasing pleasant events and positive interactions. The second seeks to reduce depression by training caregivers problem-solving strategies. Both interventions include 9 60-minute weekly sessions by therapists over 9 weeks. In the first session, the therapists meet with the patient and caregiver to cover the program and to discuss the importance of pleasant events in reducing depression. The next 4 sessions focus on identifying pleasant events and their implementation strategies. The following sessions examine the factors that may interfere with pleasant activities. The final session summarizes patients' pleasant event and their implementation plans.

Home-based

Bass, D.M., Clark, P.A., Looman, W.J., McCarthy, C.A., & Eckert, S. (2003). The Cleveland Alzheimer's managed care demonstration: Outcomes after 12 months of implementation. Gerontologist, 43(1), 73-85.

Clark, P.A., Bass, D.M., Looman, W.J., McCarthy, C.A., & Eckert, S. (2004). Outcomes for patients with dementia from the Cleveland Alzheimer's Managed Care Demonstration. Aging & Mental Health, 8(1), 40-51.

BRI Care Counselingwas delivered as a partnership between a managed care health system and an Alzheimer's Association chapter. Care consultation was delivered as a phone intervention where Association staff (2 master's trained social workers and 1 other staff person) worked with persons with dementia and their caregivers to identify personal strengths and available resources within the family, health plan, and community and then develop an individualized care plan.

Home-based, telephone counseling

Dooley, N., & Hinojosa, J. (2004). Improving quality of life for persons with Alzheimer's disease and their family caregivers: Brief occupational therapy intervention. American Journal of Occupational Therapy, 58(5), 561-569.

This study examined the extent to which adherence to occupational therapy recommendations would increase the quality of life of persons with Alzheimer's disease living in the community and decrease the burden felt by family members caring for them. Caregiving strategies that were recommended to participant pairs in the treatment group fell into 3 categories: environmental modifications, caregiver approaches, and community-based assistance. All participants received a combination of all 3 types of recommendations. The population targeted was people diagnosed with possible or probable Alzheimer's disease in mild to moderate stages of impairment.

Home-based

Beauchamp, N., Irvine, A.B., Seeley, J., & Johnson, B. (2005). Worksite-based internet multimedia program for family caregivers of persons with dementia. Gerontologist, 45(6), 793-801.

Caregiver's Friend: Dealing With Dementiais a web-based multimedia intervention that provides text material and videos modeling positive caregiving strategies. The goal was to evaluate the efficacy of the Internet based multimedia support program to employed family caregivers of persons with dementia. The intervention included multiple components of knowledge, cognitive, and behavioral skills and affective learning, which are presented in 3 modules: Being a Caregiver, Coping with Emotions, and Common Difficulties.

Internet based

Farran, C., Gilley, D., McCann, J., Bienias, J., Lindeman, D., & Evans, D. (2007). Efficacy of behavioral interventions for dementia caregivers. Western Journal of Nursing Research, 29(8) 944-960.

The goal of Caregiver Skill Building (CSB) is to help caregivers address behaviors that are most distressing by understanding the causes of the behaviors, determining the care receiver's abilities and needs, and working through possible responses. The main topics addressed include prevention of behavioral symptoms during personal care, particularly verbal and physical aggression; management of restless behaviors; and management of hallucinations, delusions, and paranoid or suspicious behaviors. A social worker or nurse meets with a group of family caregivers weekly for 5 weeks, and then conducts weekly telephone sessions with each participant over the following 7 weeks to enable greater focus on the specific concerns and needs of each caregiver. The sessions start with simpler and less distressing behavioral symptoms and move on to those that are more upsetting and complex to address, such as agitation and aggression. Group booster sessions take place at 6 and 12 months, and ongoing telephone contacts are provided as needed.

Group meeting, telephone sessions

Gitlin, L.N., Winter, L., Dennis, M.P., Hodgson, N., & Hauck, W.W. (2010). A biobehavioral home-based intervention and the well-being of patients with dementia and their caregivers: The COPE randomized trial. Journal of the American Medical Association, 304(9), 983-991.

The Care of Persons with Dementia in their Environments (COPE) program sought to support patient capabilities by reducing environmental stressors and enhancing caregiver skills. In this multicomponent intervention, all COPE dyads received exposure to each treatment element: assessments (patient deficits and capabilities, medical testing, home environment, caregiver communication, and caregiver-identified concerns); caregiver education (patient capabilities, potential effects of medications, pain, constipation, dehydration); and caregiver training to address caregiver-identified concerns and help them reduce stress. Training in problem-solving, communication, engaging patients in activities, and simplifying tasks was tailored to address caregiver-identified concerns and patient capabilities.

Home-based

Boustani, M.A., Campbell, N.L., Khan, B.A., Abernathy, G., Zawahiri, M., Campbell, T., Tricker, J., Hui, S.L., Buckley, J.D., Perkins, A.J., Faber, M.O., & Callahan, C.M. (2012). Enhancing care for hospitalized older adults with cognitive impairment: A randomized controlled trial. Journal of General Internal Medicine, 27(5), 561-567.

Clinical Decisions Support System (CDSS)and a screening program were used in a randomized controlled clinical trial to evaluate the efficacy of the integrated systems to enhance hospital care for elders with cognitive impairment. The intervention used CDSS to alert physicians of patients with cognitive impairment and recommend referral for a geriatric consult, discontinuation of Foley catheterization, physical restraints, and anticholinergic drugs.

Hospital

Akkerman, R.L., and Ostwald, S.K. (2004). Reducing anxiety in Alzheimer's disease family caregivers: The effectiveness of nine-week cognitive behavioral intervention. American Journal of Alzheimer's Disease and Other Dementias, 19(2), 117-123.

This study evaluates the effectiveness of a 9-week cognitive behavioral group therapy intervention for anxious community-dwelling family caregivers of persons diagnosed with Alzheimer's disease. Caregivers were randomly assigned to receive the cognitive behavioral therapy intervention or to the waitlist control group. The small group cognitive behavioral therapy intervention included didactic skills training. Caregivers in the cognitive behavioral therapy intervention group were asked to practice skills to reduce anxiety related to physical, cognitive, and behavioral components of caregiving.

Small group meetings

Galvin, J.E., Valois, L., & Zweig, Y. (2014). Collaborative transdisciplinary team approach for dementia care. Neurodegenerative Disease Management, 4(6), 455-469.

The Collaborative Care model seeks to improve dementia care by focusing on patient-centered care achieved by collaboration among different team members involved in patient care and inclusion of patients and caregiver in the decision making process. This article provides an example of collaborative care focuses on the role of nurse practitioners as substitutes for physicians where possible. An information packet about the program and a survey questionnaire is sent to the patients/caregiver dyads before their first visit. On the day of the visit, a 30-minute neuropsychological evaluation is conducted. As a parallel activity, the caregiver meets with a team of providers to discuss the case history of the patient. Following the first activity, the patient meets with the providers while the caregiver has a psychosocial interview needs assessment, both which take about 20 minutes. The final event is combined for the dyads where the entire team comes together to discuss assessment results, care plan, and schedule follow-ups. The final activity takes about 20 minutes.

Collaborative care dementia practice

Korn, L., Logsdon, R.G., Polissar, N.L., Gomez-Beloz, A., Waters, T., & Rÿser, R. (2009). A randomized trial of a CAM therapy for stress reduction in American Indian and Alaskan Native family caregivers. Gerontologist, 49(3), 368-377.

This study includes analysis of 2 complementary alternative medicine (CAM) therapies: polarity therapy and enhanced respite control condition. The study compares the impact of these 2 CAM therapies on psychological and physical well-being of American Indian and Alaska Native family caregivers. The intervention group received physical therapy and the control group received enhanced respite control condition. Both groups received 8 sessions. The polarity therapy program included 50-minute sessions over 8 weeks. The interventionists followed a therapist manual and physiology and point charts developed for this project. The enhanced respite control condition program provided paid care for the care recipient, allowing caregivers to participate in an activity of their choice. The enhanced respite control condition activity of the caregiver choice ranged from 60 to 120 minutes. For each session, both groups received paid care for 3 hours.

PT--Center for Traditional Medicine in Olympia, Washington, tribal health clinics

ERCC--home/activity site

Gallagher-Thompson, D., Coon, D., Solano, N., Ambler, C., Rabinowitz, Y., & Thompson, L. (2003). Change in indices of distress among Latino and Anglo female caregivers of elderly relatives with dementia: Site-specific results from the REACH national collaborative study. Gerontologist, 43(4), 580-591.

Coping with Caregivingis a psychoeducational intervention that teaches caregivers relaxation skills, assertive communication to improve interactions with providers and others in their social networks, daily pleasant event scheduling to bolster mood and activity, ways for caregivers to appraise their loved one's behavior more realistically and intervene more appropriately, and strategies to change how caregivers think about their caregiving situations. Its goal is to help caregivers cope by reducing sources of negative feelings and bolstering sources of positive mood. Training is provided to family caregivers in a group setting. Weekly 2-hour sessions take place over 10 weeks, followed by monthly booster sessions for 8 months. Interventionists are generally psychologists, social workers, or other mental health professionals. Key components of workshops include stress management, behavior problem management, communication skills, mood management strategies, and basic education about dementia and caregiving.

Group meetings in community settings

National Center for Creative Aging (NCCA). Available at http://www.creativeaging.org.

NCCA Creative Caregiving Initiative. Available at http://www.creativeaging.org/programs-people/ncca- creative-caregiving-initiative.

The web-based NCCA Creative Caregiving Guide^©and 7 Creative Caregiving Training Modules (available soon) were developed for family and professional caregivers of adults with dementia. The short, self-administered modules are designed to equip busy caregivers with research-based caregiving exercises using creative arts activities that help the caregiver and the person with dementia flourish in the art of daily caregiving, enhancing positive emotion, engagement and relationship, meaning, and mastery. Expected outcomes include enhanced quality of life and decreased depression and anxiety for persons with dementia and caregivers, but the program evaluation is not yet completed. Caregivers (family or professional) will be able to view the training modules online at their convenience as frequently as desired, but the modules are not downloadable. Each module features a master teaching artist demonstrating specific techniques with a person with dementia and a family caregiver. The modules incorporate self-care for the caregiver (such as conscious breathing), call-and-response and movement, a creative caregiving practice, and encourage the dyad to "savor the moment." The caregiver may watch the video first alone, or may include the person with dementia. At their own pace and comfort level, caregivers may begin using the techniques with the person with dementia. Most of the modules either focus on music (Sing Like a Bird, Love Duets, Mirror Dance) or include music in the activities (Tree Poems, Starry Night) demonstrated by the master teaching artist.

Web-based

Fortinsky, R.H., Kulldorff, M., Kleppinger, A., & Kenyon-Pesce, L. (2009). Dementia care consultation for family caregivers: Collaborative model linking an Alzheimer's association chapter with primary care physicians. Aging and Mental Health, 13(2), 162-170.

The primary purpose of this study was to test the efficacy of a dementia care consultation intervention for family caregivers of persons with dementia living in the community. The intervention consisted of care consultants providing individualized counseling and support to family caregivers and persons with dementia over 12 months. Consultants sent copies of care plans developed with the family caregiver to the referring primary care physicians.

Primary Care, Alzheimer's Association

Alzheimer's Association of Los Angeles, Riverside, and San Bernardino Counties Chapter, Inc., Dementia Care Network Replication Manual, (2004).

The Dementia Care Network is an interorganizational, community-based collaborative model to provide dementia care services to underserved ethnic communities. Nonprofit human services providers, community representatives, and government entities work together to achieve provide these services. The Dementia Care Network has been used in Latino, African American, Chinese, Japanese, and Vietnamese communities in California. A lead agency subcontracts with agencies in the targeted community to provide direct service. The Dementia Care Network uses a Care Advocate as the main contact for family home visits, care planning, purchase of services, and service coordination and monitoring, but range of services will vary depending on what is available in the community that is implementing a Dementia Care Network.

Nonprofit human services providers, community settings

Galvin, J.E., Kuntemeier, B., Al-Hammadi, N., Germino, J., Murphy-White, M., & McGillick, J. (2010). "Dementia-friendly hospitals: Care not crisis" an educational program designed to improve the care of the hospitalized patient with dementia. Alzheimer Disease and Associated Disorders, 24(4), 372.

The Dementia Friendly Hospitals program provided nurses and other direct care staff (social workers, pastoral care, discharge planners, physical therapists) working in hospital settings with information and resources to allow them to better care for patients with dementia from admission to discharge planning. The curriculum consisted of 5 learning modules (Introduction, Medical Overview, Approaches to Communication and Behavior, Dementia Friendly Care, and Connecting the Caregiver). The program lasted 7 hours with each module delivered by a different specialist in the relevant area.

Hospitals

Drossel, C., Fisher, J., & Mercer, V. (2011). A DBT skills training group for family caregivers of persons with dementia. Behavior Therapy, 42(1), 109-119.

Dialectical Behavior Therapy (DBT) Skills Traininguses a type of cognitive behavioral psychotherapy to help caregivers develop mindfulness, improve dementia communication skills, increase pleasant events and self-care, and develop distress tolerance skills. The main goals of this program were to reduce the risk for elder abuse and to improve quality of life for both the caregiver and the person with dementia. The program is targeted to the caregiver and lasts 9 weeks, including regular individual psychotherapy sessions using the DBT Skills Training approach and a series of 9 weekly 2.5-hour group sessions. The first session provides an introduction to the approach and to the group; after that there are 2 sessions dedicated to each module: (1) mindfulness; (2) interpersonal effectiveness; (3) emotional regulation; and (4) distress tolerance. Two graduate student therapists lead each group. Three weeks after the end of the training, optional booster sessions begin and last for an additional 9 weeks.

Community setting

Logsdon, R.G., Pike, K.C., McCurry, S.M., Hunter, P., Maher, J., Snyder, L., & Teri, L. (2010). Early-stage memory loss support groups: Outcomes from a randomized controlled clinical trial. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 65(6), 691-697.

This randomized controlled trial compared a time-limited ESML group program conducted by a local Alzheimer's Association chapter to a waitlist control condition. The ESML intervention is a structured support group program that follows a written manual that has been revised and updated regularly by Alzheimer's Association staff to ensure continued accuracy and regional applicability. ESML sessions averaged 90 minutes in duration and met weekly for 9 weeks. Each session included both individuals with early-stage dementia and a family care partner, who met together for part of the session and separately for part of the session. All groups were provided free of charge to participants. Groups were held in convenient community locations (adult day centers, senior centers, etc.) to minimize transportation burden on participants. Each ESML group had 3-4 volunteer facilitators. At least 2 facilitators in each group were master's degree level professionals experienced in working with individuals with dementia, who had already conducted 1 or more early-stage support groups prior to participating in this investigation. To ensure treatment fidelity, facilitators participated in a daylong training workshop each year to familiarize them with research procedures and refresh their knowledge of the intervention.

Community locations (adult day centers, senior centers, etc.)

Catic, A.G., Mattison, M.L.P, Bakaev, I., Morgan, M., Monti, S.M. & Lipsitz, L. (2014) ECHO-AGE: An innovative model of geriatric care for long-term care residents with dementia and behavioral issues. Journal of the American Medical Directors Association, 15. 938-942.

ECHO-AGEis a remote case-based video consultation program that connects experts in the area of managing behavior of people with dementia to nursing home care providers. The intervention tested involved long-term care facilities presenting challenging cases related to the behavior of residents with dementia or delirium to specialists via video-conferencing. Specialists included a geriatrician, geriatrics hospitalist, geriatrics psychiatrist, behavioral neurologist, and community resource specialist. Specialists typically recommended behavioral plans or medication adjustments. Patients' families were invited to participate in the video-conferencing sessions.

Long-term care facilities

Tremont, G., Davis, J.D., Papandonatos, G.D., Ott, B.R., Fortinsky, R.H., Gozalo, P., Yue, M.S., Bryant, K., Grover, C. & Bishop, D.S. (2015). Psychosocial telephone intervention for dementia caregivers: A randomized, controlled trial. Alzheimer's and Dementia, 11(5), 541-548.

This was a randomized controlled trial with an objective to examine the effects of an entirely telephone-based intervention on caregiver well-being, including depressive symptoms, burden, and reactions to care recipient behavior problems in distressed dementia caregivers. Secondary aims were to examine effects of the intervention on measures of self-efficacy, family functioning, and health-related quality of life.

Academic medical center

Boustani, M.A., Sachs, G.A., Alder, C.A., Munger, S., Schubert, C.C., Guerriero Austrom, M., Hake, A.M., Unverzagt, F.W., Farlow, M., Matthews, B.R., Perkins, A.J., Beck, R.A., & Callahan, C.M. (2011). Implementing innovative models of dementia care: The Healthy Aging Brain Center. Aging and Mental Health, 15(1), 13-22.

LaMantia, M.A., Alder, C.A., Callahan, C.M., Gao, S., French, D.D., Austrom, M.G., Boustany, K., Livin, L., Bynagari, B., & Boustani, M.A. (2015). The Aging Brain Care Medical Home: Preliminary Data. Journal of the American Geriatrics Society, 63, 1209-1215.

Monahan, P.O., Boustani, M.A., Alder, C., Galvin, J.E., Perkins, A.J., Healey, P., Chehresa, A., Shepard, P., Bubp, C., Frame, A., & Callahan, C. (2012). Practical clinical tool to monitor dementia symptoms: the HABC-Monitor. Clinical Interventions in Aging, 7, 143-157.

Health Care Innovation Awards. Available at https://innovation.cms.gov/files/x/hcia-project-profiles- second-batch-only.pdf .

Healthy Aging Brain Care (HABC)is a type of collaborative care model designed to reduce dementia-related burden among dementia patients and their caregivers. HABC was developed at Wishard Health Services. The first phase of the program, which is the initial assessment phase, includes 3 steps: (1) pre-visit is used for initial assessment of patient/caregiver dyads; (2) first visit is used for complete diagnostic evaluation; (3) second visit involves the initiation of the care plans, which is personalized based on the first 2 steps. The follow-up phase of the program includes: (1) telephone follow-up by the care coordinator within 2-3 weeks of initial visit; and (2) in-person follow-up to evaluate patient's individualized care plan. The frequency of in-person follow-up may vary based on patient's need.

Primary care clinic, telephone, email

Park, H., & Pringle Specht, J.K. (2009). Effect of individualized music on agitation in individuals with dementia who live at home. Journal of Gerontological Nursing, 35(8), 47-55.

Individualized Musicwas a pilot program designed to reduce agitation in persons with dementia by selecting music based on their personal preferences and integrating the music into their daily lives. The music is intended to trigger positive memories to reduce anxiety and agitation. Key elements of the training are guidance for family caregivers in selecting culturally appropriate music for the person with dementia and in choosing the best timing for playing the music to reduce agitation. Additional benefits may include positive affect, meaningful interaction with others, expression of satisfaction, and reduction of anxiety, but these have not been tested in the home setting. A nurse trainer visits the family twice, 1 week apart, to train the family caregiver in use of individualized music, selection, and preparation of the person with dementia's choices of music on a CD using the author's Assessment of Personal Music Preference. The nurse also assesses the person with dementia's daily patterns of agitation. For 2 weeks the family caregiver plays 30 minutes of individualized music for the person with dementia a minimum of 30 minutes prior to peak agitation times. The family caregiver measured agitation levels 30 minutes before, during, and after playing music. Following a 2-week break without music, the researcher then repeated the cycle for a total of 8 weeks of intervention. The nurse visited the family once a week during music-playing weeks to answer caregiver questions.

Home-based

Health Care Innovation Awards: Second (Final) Batch. Available at https://innovation.cms.gov/files/x/hcia-project-profiles- second-batch-only.pdf.

The University of North Texas Health Science Center, in partnership with Brookdale Senior Living, is expanding and testing the Brookside Senior Living Transitions of Care Program, which is based on an evidenced-based assessment tool called Interventions to Reduce Acute Care Transfers (INTERACT) for residents living in independent living, assisted living, and dementia-specific facilities in Texas and Florida. In addition, community-dwelling older adults who receive Brookside Senior Living home health services will be included in the Transitions of Care Program. Over the course of the award, the program will expand to other states where Brookside Senior Living communities are located. The program will employ clinical nurse leaders to act as program managers. Clinical nurse leaders will train care transition nurses and other staff on the use of INTERACT and health information technology resources to help them identify, assess, and manage residents' clinical conditions to reduce preventable hospital admissions and readmissions. The goal of the program is to prevent the progress of disease, thereby reducing complications, improving care, and reducing the rate of avoidable hospital admissions for older adults.

Dementia-specific facilities, other facilities, home-based

Health Care Innovation Awards: Project Profiles, University of Rhode Island. Available at http://innovation.cms.gov/initiatives/participant/Health- Care-Innovation-Awards/University-Of-Rhode-Island.html.

The University of Rhode Island's Living RIte innovations project is delivering coordinated care through 2 Living RIte Centers. The Centers provide comprehensive chronic care management to coordinate services between multiple community providers, improve health, and decrease unnecessary hospitalizations and emergency room visits. There is an interdisciplinary team that includes physicians, nurse practitioners, RNs, pharmacists, occupational therapists, physical therapists, and dieticians. Clients are trained in how to best manage their chronic diseases. Centers provide career development, benefits planning and job placement for certain clients.

Community-based

Samus, Q.M., Johnston, D., Black, B.S., Hess, E., Lyman, C., Vavilikolanu, A., Pollutra, J., Leoutsakos, J.-M., Gitlin, L.N., Rabins, P.V., & Lyketsos, C.G., (2014) A multidimensional home-based care coordination intervention for elders with memory disorders: The Maximizing Independence at Home (MIND) Pilot Randomized Trial. American Journal of Geriatric Psychiatry, 22(4): 398-414.

MIND at Homeis a home-based care coordination intervention with the goal of delaying transitions from the home and reducing unmet care needs in persons with dementia or persons with mild cognitive impairment who live in the community. A nonclinical community worker provided the care coordination with assistance from an RN and geriatric psychiatrist. Care coordination included identification of needs and care planning to address unmet needs based on results of Johns Hopkins Dementia Care Needs Assessment and to match preferences of the patient and family, dementia education and skill-building, coordination, referral and linkage to services within the community, and care monitoring.

Home-based

Whitebird, R.R., Kreitzer, M., Crain, A.L., Lewis, B.A., Hanson, L.R., & Enstad, C.J. (2013). Mindfulness-based stress reduction for family caregivers: A randomized controlled trial. Gerontologist, 53(4), 676-686.

The purpose of this study was to compare a mindfulness-based stress reduction intervention to a community caregiver education and support intervention for family caregivers of people with dementia. Mindfulness-based stress reduction participants (family caregivers of persons with dementia) received instruction about concepts of mindfulness and practiced meditation and gentle yoga each week. Mindfulness-based stress reduction was compared to community caregiver education and support where caregiver participants received education on issues affecting family caregivers and social and emotional support.

Research center--in-person group sessions

Simard, J. & Volicer, L. (2010). Effects of Namaste care on residents who do not benefit from usual activities. American Journal of Alzheimer's Disease and Other Dementias, 25(1), 46-50.

The Namaste Care Program is for nursing home residents who cannot participate in regular nursing home activities because of advanced dementia or earlier stages of dementia with agitation. Activities are conducted in a room free from environmental distractions and staffed by specially trained nursing assistants. Nursing assistants receive training on advanced dementia and the Namaste Care Program components. The program is offered 7 days a week for 5 hours a day. Once residents are in the program room, nursing assistants provide ADL care as meaningful activities, such as soaking hands in warm lavender-scented water prior to clipping nails. Other activities included watching nature DVDs and providing comfort through realistic-looking stuffed animals.

Nursing home

Mittleman, M.S., & Bartels, S.J. (2014). Translating research into practice: Case-study of a community-based dementia caregiver intervention. Health Affairs, 33(4), 587-595.

The goals of New York University Caregiver Intervention (NYUCI) are to improve caregivers' ability to handle difficulties of caregiving and to avoid or delay the need for institutional care for the person with dementia. Intervention includes individual and family counseling, caregiver support group, and telephone-based counseling for caregiver. The counselor also provides information and referrals to services.

Individual and small group meetings, telephone

McCurry, S., Gibbons, L., Logsdon, R., Vitiello, M., & Teri, L. (2005). Nighttime insomnia treatment and education for Alzheimer's disease: A randomized, controlled trial. Journal of the American Geriatric Society, 53, 793-802.

Nighttime Insomnia Treatment and Education for Alzheimer's disease (NITE-AD)is a 2-month intervention program on sleep in people with dementia living at home with family caregivers. The intervention was introduced in 6 1-hour sessions in their home over 2 months which were led by a geropsychologist. The targeted population was people with dementia living at home with family caregivers. Patients showed significant posttest differences with control subjects, including reductions in number of nighttime awakenings, total time awake at night, depression, and an increase in mean weekly exercise days. A treatment manual is available for both the active treatment and contact control conditions described in the article.

Home-based

Kuhn, D.R. & Forrest, J.M. (2012). Palliative care for advanced dementia: A pilot project in 2 nursing homes. American Journal of Alzheimer's Disease and Other Dementias, 27(1), 33-40.

Long, C.O. (2009). Palliative care for advanced dementia: Approaches that work. Journal of Gerontological Nursing, 35(11), 19-24.

Alonzo, T., Mitchell, K., & Knupp, C. (2015). Comfort care for people with dementia: The Beatitudes campus model. In M.L. Malone et al. (eds.), Geriatrics Models of Care: Bringing "Best Practice" to an Aging America (pp. 299-302). Switzerland: Springer International Publishing.

Palliative Care for Advanced Dementiaincludes a core training program where staff learn key concepts of dementia care, have 1:1 direct care experience peer training at a facility using the program, engage in self-study, and receive targeted training on comfort-focused behavior management, assessing and addressing pain, stimulating the senses for persons with dementia, end-of-life/hospice care, and medical provider education and support. The program takes place in a long-term care facility unit where residents in the moderate to advanced stages of dementia live. The program uses many practices to promote comfort. Care plans are written from the perspective of the person with dementia, no physical restraints are used, and there is a 24-hour restaurant with customization for dietary needs. The program also has a continuous activity program with individualized sensory-calming and sensory-stimulating activities to help avoid sundowning. Direct caregivers received training in comfort-management. Staffing ratios of 1:8 for certified nursing assistants and 1:22 for licensed nursing staff.

Long-term care facility

Shega, J.W., Levin, A., Hougham, G.W., Cox-Hayley, D., Luchins, D., Hanrahan, P., Stocking, C., & Sachs, G. A. (2003). Palliative excellence in Alzheimer care efforts (PEACE): A program description. Journal of Palliative Medicine, 6(2), 315-320.

The Palliative Excellence in Alzheimer Care Efforts (PEACE) program aims to improve end-of-life care of persons with dementia and to integrate palliative care into the primary care of patients with dementia throughout the course of the illness. The PEACE program is a disease management model for dementia that incorporates advance planning, patient-centered care, family support, and a palliative care focus from the diagnosis of dementia through its terminal stages. Patients and caregivers are interviewed every 6 months for 2 years, and a post-death interview is conducted with caregivers. These interviews assess care domains important for the optimal care of persons with dementia and their caregivers. A nurse coordinator reviews interviews and provides feedback to physicians, facilitating enhanced individual care and continuous quality improvement for the practice.

Hospice

Bass, D.M., Judge, K.S., Maslow, K., Wilson, N.L., Morgan, R.O., McCarthy, C. A., Looman, W.J., Snow, A.L., & Kunik, M.E. (2015). Impact of the care coordination program "Partners in Dementia Care" on veterans' hospital admissions and emergency department visits. Alzheimer's and Dementia: Translational Research and Clinical Interventions, 1(1), 13-22.

Bass, D.M., Judge, K.S., Lynn Snow, A., Wilson, N.L., Morgan, R., Looman, W.J., McCarthy, C.A., Maslow, K., Moye, J.A., Randazzo, R., Garcia-Maldonado, M., Elbein, R., Odenheimer, G., & Kunik, M.E. (2013). Caregiver outcomes of partners in dementia care: Effect of a care coordination program for veterans with dementia and their family members and friends. Journal of the American Geriatrics Society, 61(8), 1377-1386.

Bass, D.M., Judge, K.S., Snow, A.L., Wilson, N.L., Morgan, R.O., Maslow, K., & Elbein, R. (2014). A controlled trial of Partners in Dementia Care: Veteran outcomes after six and twelve months. Alzheimer's Research and Therapy, 6(1), 9.

The Partners in Dementia Care model provides education, resources, and support via telephone. The model also coordinates health care and community services between VA Medical Centers and Alzheimer's Association chapters with a goal of reducing hospital admissions and emergency department visits by veterans with dementia. Care coordinators from the VA and the Alzheimer's Association work with persons with dementia and their caregivers to identify priority concerns and to develop specific, manageable action steps. Care notes are shared via cross-organization electronic records.

Telephone, e-mail, mail

Gerdner, L., Hall, G., & Buckwalter, K. (1996). Caregiver training for people with Alzheimer's based on a stress threshold model. Image: Journal of Nursing Scholarship, 28(3), 241-246.

Hall G.R., & Buckwalter, K.C. (1987). Progressively lowered stress threshold: A conceptual model for care of adults with Alzheimer's disease. Archives of Psychiatric Nursing, 1, 399-406.

Smith, M, Gerdner, L.A., Hall, G.R., & Buckwalter, K.C. (2004). History, development, and future of the progressively lowered stress threshold: A conceptual model for dementia care. Journal of the American Geriatrics Society, 52, 1755-1760.

The Progressively Lowered Stress Threshold (PLST) model addresses the anxiety and agitation caused by environmental stressors, such as unnecessary noise and internal stressors such as pain. The PLST intervention aims to reduce stress by modifying the environment which promotes adaptive behavior and in turn a decrease in anxiety, wandering, and agitation. PLST sessions take place in a nursing facility, adult day care, acute care hospitals, or the home of the person with dementia and include both the person with dementia and the caregiver as active participants. The nurse interventionist provides education about the disease process, assists with strategies that promote adaptive behavior, simplifies daily tasks, assists with problem-solving strategies over the course of the illness as abilities change, locates resources and provides support, and assumes a case management role.

Nursing facility, adult day care, acute care hospitals, home-based

Gonyea, J.G., O'Connor, M.K., & Boyle, P.A. (2006). Project CARE: A randomized controlled trial of behavioral intervention group for Alzheimer's disease caregivers. Gerontologist, 46(6), 827-832.

Project CAREis a behavioral intervention that included 5 weekly sessions to teach caregivers techniques for managing neuropsychiatric symptoms of dementia in their home. Each session was run by a therapist and had a different focus, including teaching the ABC model of behavior change.

Group setting

Menne, H.L., Bass, D.M., Johnson, J.D., Primetica, B., Kearney, K.R., Bollin, S., Molea, M.J., & Teri, L. (2014). Statewide implementation of "reducing disability in Alzheimer's disease": Impact on family caregiver outcomes. Journal of Gerontological Social Work, 57(6-7), 626-639.

Teri, L., Gibbons, L.E., McCurry, S.M., Logsdon, R.G., Buchner, D.M., Barlow, W.E., Kukull, W.A., LaCroix, A.Z., McCormick, W., & Larson, E.B. (2003). Exercise plus behavioral management in patients with Alzheimer disease. Journal of the American Medical Association, 290(15).

Teri, L., McKenzie, G., Logsdon, R., McCurry, S., Bollin, S., Mead, J., & Menne, H. (2012). Translation of two evidence-based programs for training families to improve care of persons with dementia. Gerontologist, 52(4), 452-459. doi: 10.1093/geront/gnr132.

Reducing Disability in Alzheimer's Disease (RDAD)is designed to increase exercise and physical activity in persons with dementia and to instruct caregivers in approaches to reducing behavioral and psychological symptoms using the ABC model of behavioral change. Outcomes of interest include physical functioning, depression, and behavioral symptoms in the person with dementia. RDAD sessions take place in the home of the person with dementia and include both the person with dementia and the caregiver as active participants. The interventionist, who may be a physical therapist, social worker, or other aging services professional trained in the intervention, guides the person with dementia through a series of exercises while the caregiver observes. The caregiver is also provided with dementia education and instructed in behavior management through problem-solving. Topics covered include disease symptoms and progression, home safety and environmental modifications, and legal and financial issues. Training takes place over 12 1-hour sessions, which occur more frequently initially (2 sessions/week for the first 3 weeks, then once/week for 4 weeks, then biweekly for 4 weeks).

Home-based

Gitlin, L.N., Winter, L., Corcoran, M., Dennis, M.P., Schinfeld, S., & Hauck, W.W. (2003). Effects of the home environmental skill-building program on the caregiver-care recipient dyad: 6-month outcomes from the Philadelphia REACH initiative. Gerontologist, 43(4), 532-546.

Gitlin, L.N., Jacobs, M., & Earland, T. (2010). Translation of a dementia caregiver intervention for delivery in home care as a reimbursable Medicare service: Outcomes and lessons learned. Gerontologist, 50(6), 847-854.

REACH ESPis a translation of the REACH project. This program is designed for patients living in their homes and is aimed at reducing family caregiver burden by educating caregivers about the disease, easing the impact of the home environment on the person with dementia's behavior, and helping develop skills to better respond to environment related issues. REACH ESP was implemented in 2 phases: The active phase was delivered through 5 90-minute homes visits, and 1 30-minute telephone contact, over 6 months. The components of the home visits included assessment of areas that are difficult for the caregiver to manage, caregiver education, assessment of problem areas in the person with dementia's environment, and supporting caregivers in the process of making environmental modifications.

Home-based

Belle, S.H., Burgio, L., Burns, R., Coon, D., Czaja, S.J., Gallagher-Thompson, D., Gitlin, L. N., Klinger. J., Koepke, K.M., Lee, C.C., Martindale-Adams, J., Nichols, L., Schulz, R., Stahl, S., Stevens, A., Winter, L., & Zhang, S. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: A randomized control trial. Annals of Internal Medicine, 145(10), 727-38.

Nichols, L.O., Chang, C., Lummus, A., Burns, R., Martindale-Adams, J., Graney, M.J., Coon, D.W., & Czaja, S. (2008). The cost-effectiveness of a behavior intervention with caregivers of patients with Alzheimer's disease. Journal of the American Geriatrics Society, 56(3), 413-420.

Easom, L.R., Alston, G., & Coleman, R. (2013) A rural community translation of a dementia caregiving intervention. Online Journal of Rural Nursing and Health Care, 13(1), 66-91.

The overall objectives of REACH II are to identify and reduce risk factors among family caregivers, enhance quality of care for the person with dementia, and enhance the well-being of the caregiver. The REACH II intervention focuses on 5 areas linked to caregiver stress: safety, self-care, social support, emotional well-being; and problem behaviors. A risk appraisal is used to determine which areas need the greatest focus. Caregiver training and counseling are provided over a 6-month period in 9 1.5-hour sessions in the person's home, 3 half-hour telephone calls, and 5 telephone support group sessions.

Home-based

Nichols, L.O., Martindale-Adams, J., Burns, R., Zuber, J., & Graney, M.J. (2016). REACH VA: Moving from translation to system implementation. Gerontologist, 56(1), 135-144.

REACH VAis a translation of the REACH II program through the VA system. The core goals of the program are the same as that of REACH II, but some details of implementation have been modified to meet the needs of the VA service providers. REACH VA has been implemented using 2 different approaches: the first was delivered through 12 individual sessions, primarily in the home, and 5 telephone support group sessions over 6 months, as in REACH II.

Home-based

Gonzalez, E., Polansky, M., Lippa, C., Gitlin, L., & Zauszniewski, J. (2014). Enhancing resourcefulness to improve outcomes in family caregivers and persons with Alzheimer's Disease: A pilot randomized trial. International Journal of Alzheimer's Disease, 1-10.

Resourcefulness trainingaims to reduce caregiver strain and depression, increase preparedness, and reduce problem behaviors using a cognitive-behavioral approach. The program uses dementia education to help caregivers understand disease-related changes, reframe thinking about caregiving issues, and use problem-solving and coping skills. Resourcefulness training sessions include 5-7 caregivers and meet weekly for 2 hours, led by a RN. Participants are guided through a process of finding facts about the situation, setting a realistic goal, developing optimism about the ability to manage the problem, using creativity to brainstorm solutions, considering which to implement, and evaluating the effectiveness of the solution.

Weekly sessions

Samia, L., Aboueissa, A., Halloran, J., & Hepburn, K. (2014). The Maine Savvy Caregiver project: Translating an evidence-based dementia family caregiver program within the RE-AIM framework. Journal of Gerontological Social Work, 57(6-7), 640-661.

Kally, Z., Cote, S., Gonzalez, J., Villarruel, M., Cherry, D., & Howland, S. et al. (2014). The Savvy Caregiver program: Impact of an evidence-based intervention on the well-being of ethnically diverse caregivers. Journal of Gerontological Social Work, 57(6-7), 681-693.

Savvy Caregiver is a psychoeducational program designed to train family and professional caregivers in the basic knowledge, skills, and attitudes needed to handle the challenges of caring for a family member with Alzheimer's disease and to be an effective caregiver. Targeted outcomes include caregiver knowledge, confidence, self-efficacy, and depression and development of meaningful activities for the person with dementia. Savvy Caregiver is a 12-hour training program that is delivered in a group setting, typically in 2-hour sessions over a 6-week period. Interventionists may come from a variety of professional backgrounds; train-the-trainer materials and resources are available. Session content covers dementia, the cognitive changes that are occurring and how they affect behaviors, establishing realistic caregiving goals, gauging the care recipient's abilities, designing appropriate activities for the person with dementia, and using a problem-solving approach to manage behavioral symptoms.

Group meeting

Samia, L., Merchant, C., O'Sullivan, A., & Fallon, K. (2014). The Maine Savvy Caregiver Project-Enhanced for Caregivers of Persons with Alzheimer's Disease and Related Dementias: Translation Report. Office of Aging and Disability Services, Maine Department of Health and Human Services.

Savvy Caregiver 2was developed to provide advanced training to family caregivers who completed the original Savvy Caregiver program. Savvy Caregiver 2 is a 4-week program that focuses on the challenges that are likely to be faced over time as dementia progresses and addresses ADLs, advanced behavior guidance (with increased emphasis on the effect the environment can have on the person with dementia), caregiver self-care, future planning to prepare for the challenges ahead, problem-solving, and care team enhancement. Interventionists come from a variety of professional backgrounds, but because the curriculum for Savvy 2 is less structured and covers more complex situations, the developers indicate that interventionists need to have strong problem-solving skills and the ability to think on their feet.

Caregiver workshop

Specht, J., Bossen, A., Hall, G.R., Zimmerman, B., & Russell, J. (2009). The effects of a dementia nurse care manager on improving caregiver outcomes. American Journal of Alzheimer's Disease and Other Dementias, 24 (3) 193-207.

In this program, a nurse care manager with specialized training in dementia management and assessment worked with persons with dementia and their caregivers to identify, assess, and address challenges and changing needs using a number of methods. Nurse developed service plans to promote communication and collaboration among community service providers, caregivers, and other informal supports with the ultimate goal of providing seamless service delivery. Included in-home and telephone meetings/support.

In-home and telephone meetings/ support

Teri, L., McCurry, S., Logsdon, R., & Gibbons, L. (2005). Training community consultants to help family members improve dementia care: A randomized controlled trial. Gerontologist, 45(6), 802-811.

Teri, L., McKenzie, G., Logsdon, R., McCurry, S., Bollin, S., Mead, J., & Menne, H. (2012). Translation of two evidence-based programs for training families to improve care of persons with dementia. Gerontologist, 52(4), 452-459. doi: 10.1093/geront/gnr132.

STAR-Cis a behavioral intervention designed to decrease depression and anxiety in individuals with Alzheimer's disease and their family caregivers. Treatment components include general education about Alzheimer's disease, practice using a systematic approach to identifying and reducing behavior problems in dementia (the ABC model of behavior change), communication skills training, information about the relationship between mood and pleasant events, and caregiver support. The intervention is delivered over a 6-month period by community clinicians with a master's degree in counseling, psychology, social work, or a related field. The interventionist meets with a family caregiver in the home once a week for 8 weeks. Between meetings, caregivers record behavioral symptoms and the strategies he or she used to address them. After the in-home meetings, the consultant follows up with the caregiver through 4 monthly telephone calls. These calls are intended to help the caregiver develop strategies to address new behavioral symptom, and they help to reinforce previous learnings.

Home-based

Lewis, S.L., Miner-Williams, D., & Novian, A. (2009). A stress-busting program for family caregivers. Rehabilitation Nursing, 34:4, 151-159.

The Stress-Busting Program provides caregivers with education, stress management, problem-solving, and support, including strategies on how to care for themselves while caring for a loved one with dementia. The goal is to improve caregiver health, mental health, and social support and to decrease anger, anxiety, burden, stress and depression. The program consists of 90-minute sessions that occur once a week for 9 weeks. The program is conducted in a small group setting with 2 group facilitators. Participants are provided many resources, including a handbook covering class material, a meditation CD, and a relaxation strategies DVD. Session topics include unique caregiver stressors; physical and emotional effects of stress; creating a relaxing environment; grief, loss and depression; coping skills; managing behavioral and psychological symptoms of dementia; positive thinking and cognitive restructuring; healthy living; and creating a plan.

Small group meetings

Gitlin, L.N., Winter, L., Burke, J., Chernett, N., Dennis, M., & Hauck, W. (2008). Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: A randomized pilot study. American Journal of Geriatric Psychiatry, 16(3), 229-239.

The Tailored Activity Program (TAP) seeks to reduce behavioral disturbances and depression in the person with dementia by using occupational therapy techniques to identify patients' existing abilities and previous interests and to devise activities that build on them. The Program includes 6 90-minute home visits and 2 brief telephone contacts by occupational therapists over 4 months. Contacts are spaced to provide caregivers opportunities to practice using activities independently. During the first 2 sessions, interventionists meet with caregivers to discern daily routines and previous/current activity interests. They assess the person with dementia and the home environment and observe communication between the caregiver and person with dementia. In subsequent sessions, interventionists identify 3 activities and developed 2-3 page written plans for each, including an activity (completing a puzzle form board) and goal (engaging in the activity for 20 minutes each morning after breakfast) and specific implementation techniques. Activities are introduced through role play or direct demonstration with the person with dementia. Caregivers are also instructed in stress reducing techniques such as deep breathing to help establish a calm emotional tone. Caregivers practice using the activity between visits, and once an activity is mastered, another is introduced.

Home-based

Kwak, J., Montgomery, R.J.V., Kosloski, K, & Lang, J. (2011). The impact of TCARE on service recommendation, use, and caregiver well-being. Gerontologist, 51(5), 704-7013.

Tailored Caregiver Assessment and Referral (TCARE)is a care management process to help practitioners efficiently triage resources and services available within a community to address caregivers needs. This care management process includes 2 meetings with caregivers and a process for designing a care plan that meets the needs and preferences of the caregiver. An algorithm is used to identify an intervention goal, strategies to reach the goal, and a generic list of services consistent with the strategies.

Meetings with caregivers

Wray, L.O., Shulan, M.D., Toseland, R.W., Freeman, K.E., Wasquez, B.E., & Gao, J. (2010). The effect of telephone support groups on costs of care for veterans with dementia. Gerontologist, 50, 623-631.

The Telehealth Education Program (TEP) is designed to provide education and support for spousal or partner caregivers of veterans with moderate to severe dementia. Each caregiver receives 1-hour sessions of the TEP weekly for 10 weeks. Sessions involved education about dementia and symptoms, caregiving skills and resources to address symptoms, coping strategies, and group support.

Small group via phone

Naylor, M.D., Hirschman, K.B., Hanlon, A.L., Bowles, K.H., Bradway, C., McCauley, K.M., & Pauly, M.V. (2014). Comparison of evidence-based interventions on outcomes of hospitalized, cognitively impaired older adults, Journal of Comparative Effectiveness Research, 3(3), 245-257.

Naylor, M.D., Stephens, C., Bowles, K.H., & Bixby, M.B. (2005). Cognitively impaired older adults: From hospital to home. American Journal of Nursing, 105, 52-61.

The Transitional Care Model (TCM) is intended to improve transitions from hospital to home, reduce associated functional decline, readmissions, and nursing home placement, and decrease mortality for people with cognitive impairment and dementia at any stage. Beginning in the hospital and continuing with visits in the person's home and ongoing in person and telephone contacts for about 2 months, the person and the family caregiver receive information, support, counseling, and help with coordinating care from the person's medical providers, managing medications, problem-solving, and arranging needed community services.

Hospital and home, in-person and telephone

Health Care Innovation Awards Round Two: Project Profiles, Regents of the University of California San Francisco. Available athttps://innovation.cms.gov/initiatives/Participant/Health- Care-Innovation-Awards-Round-Two/Regents-Of- The-University- Of-California-San-Francisco.html.

The Dementia Care Ecosystem is a clinical program that builds on the UCSF Memory and Aging Center's dementia care, while incorporating the UNMC expertise in functional monitoring and rural dementia care. This model emphasizes continuous and personalized care. The target population is Medicare beneficiaries and persons dually eligible for Medicare and Medicaid. By supporting family caregivers, keeping patients healthy, and helping them prepare for advancing illness, the model aims to improve satisfaction with care, prevent emergency-related health care costs, and keep patients in their home longer. The primary point of contact for patients and families will be a Care Team Navigator with 24/7 availability. An innovative "dashboard" with both Care Team Navigator and patient portals will focus on efficient and personalized communication among the Care Team Navigator, care team, and the patient and family. There are 4 modules to the Dementia Care Ecosystem: Caregiver, Decision Making, Medication, and Functional Monitoring.

Intervention run through 4 modules