Examining Models of Dementia Care: Final Report. 2. DEMENTIA CARE COMPONENTS

09/01/2016

2.1. Methodology for Developing Dementia Care Components

2.1.1. Review of Existing Care Guidelines

In developing best practice components of dementia care, the project team reviewed existing clinical guidelines and practice recommendations for home and community-based care, primary care, assisted living, nursing home, and hospice care. Clinical guidelines and practice recommendations draw on available research evidence and expert opinion to determine practice standards. Dementia care guidelines and recommendations from the U.S. Department of Health and Human Services (HHS) Agency for Healthcare Research and Quality National Guidelines Clearinghouse, the clinical practice literature, discipline-specific professional associations, and Alzheimer's Association recommendations for health care professionals were reviewed. Guidelines were selected only if they were published within the last 10 years. In addition, the team reviewed quality indicators from the National Committee for Quality Assurance, Healthy People 2020, Nursing Home Compare, and the Physician Quality Reporting System. A total of 37 sources were selected for review representing a variety of disciplines and areas of dementia care.

The guideline review initially identified 16 key domains of dementia care, which were later modified to 14 key domains after incorporating the findings of the five site visits. Once these broad domains were identified, the guidelines were analyzed in detail to place specific detailed recommendations or standards from each guideline within the relevant domain. Each component was then analyzed to develop an overview statement that reflected the recommendations or standards supplemented by detailed dementia care standards that represent the recommendations and standards from the selected guidelines. Throughout the process, the team recognized that a particular standard could be placed under more than one component and tried to select the most logical placement. When selecting where to place a standard, the team focused on the overall intent of the guideline authors, but readers may feel that some standards should be placed in different components.

In addition, some standards--for example, standards with respect to the importance of involving the person with dementia directly in care discussions and decisions, and using that person's expressed preferences to guide care--were stated in strikingly different words in different standards. The team noted the broad range of wording and attempted to represent accurately the core concepts. In this report, the term "family" includes the primary caregiver, other relatives, and close friends and neighbors who know the person well and can represent his or her best interests.

Some of the guidelines include standards that require licensed professionals, for example, physicians and pharmacists. In general, however, the standards included in this report describe functions that could be performed by a range of disciplines and providers in a variety of settings. For example, assessment can be performed by various disciplines and providers working with the person with dementia and his or her caregivers. Even though many of the guidelines are written for or by specific professional groups, our care components are intended to identify general best practices rather than focus on the credentials of the discipline or provider that performs them. Overarching principles for these best practice standards include person-centered, interdisciplinary assessment and care, and professional and provider training about the specific needs of persons with dementia and their families.

2.1.2. Review of Draft Care Components by Subject Matter Experts

To ensure broad agreement in the field with the standards, subject matter experts with experience in evidence-based interventions, geriatric medicine, early-stage programming, end-of-life dementia care, person-centered approaches to dementia care, dementia friendly communities, family caregiver skill-building, and rehabilitation therapies were asked to review them. The experts included the following persons and others:

  • Michelle Barclay, MA, Executive Co-Lead of Minnesota's Act on Alzheimer's and President of the Barclay Group, LLC;

  • David Bass, PhD, Vice President for Research and Director of the Margaret Blenkner Research Institute, Benjamin Rose Institute on Aging;

  • Christopher Callahan, MD, Director, Indiana University Center for Aging Research, and Staff Physician, Department of Medicine, Eskenazi Health;

  • Maribeth Gallagher, NP, PhD, Director of the Dementia Program, Hospice of the Valley; and

  • Catherine Piersol, PhD, OTR, Associate Professor, Department of Occupational Therapy, Thomas Jefferson University and Director, Jefferson Elder Care.

Overall, the subject matter experts agreed with the identified components and standards. They did not suggest that any components be added, deleted, or combined. Their comments generally focused more on providing additional detail and greater emphasis on specific topics. The team compared the experts' comments with the content of the guidelines. When the comments were reflected in the guidelines, the team modified the draft to include them. In some instances, however, the subject matter experts' comment was not explicitly stated in any of the selected guidelines. In those instances, these comments were not included. Comments that were not incorporated pertained to a range of topics, such as terms to use for family and other caregivers; specific safety risks, such as guns; use of specific standardized assessment instruments; physician office practice redesign; the importance of encouraging the family caregiver to participate in the person's medical visits; the specific needs of persons with early-stage dementia; and specific recommendations on how to handle disagreements among family members.

2.1.3. Changes to Components Based on Case Studies

Following the site visits, the project team reviewed the original 16 components and decided to combine two sets of two components and modify the name of one of the components, resulting in a final list of 14 components. The two components, Inclusion of Caregivers and Emotional Support and Assistance for Family Caregiver(s), were combined to form Involvement, Emotional Support, and Assistance for Family Caregiver(s). The program staff at each of the sites consistently stated that the needs of family caregivers overlapped these areas and that it is not unusual for a family caregiver to seek support in each of these areas even during a single interaction with the staff. During the site visits, the project team also learned that program staff generally merged the activities involved in Referral and Coordination of Care and Services with Collaboration among Agencies and Providers. The program staff at the various sites shared a common vision of best practice in dementia care that involves communication and coordination across providers and agencies. The original component covering behavioral and psychological symptoms of dementia used the word Management and during the site visits, program staff spoke about the importance of defining in more specific terms what is required of providers responding to these challenging symptoms such as knowing the person's preferences and daily routine as a way to anticipate unmet needs to prevent or decrease behavioral and psychological symptoms. The component name was changed to Prevention and Mitigation of Behavioral and Psychological Symptoms of Dementia.

2.2. Final Care Components

Two tables summarize our findings regarding the principles of good dementia care. Table 2-1 presents high-level principles of normative care. Table 2-2 includes those broad principles but adds detailed recommendations within the identified domain.

Two appendix tables provide the raw data from which high-level principles and the detailed recommendations were derived. Appendix A-1 presents the 14 domains and the recommendations relative to each domain found within the 37 sets of reviewed guidelines, by the source of the guideline. In Appendix A-1, the exact wording of the practice standards was retained to the extent possible to reflect their original intent and to capture specific clinical guidance. Citations were included with each overview statement and each detailed dementia care standard to ground the guidelines in the professional and research literature. Appendix A-2 presents a count of the mention of each domain within the guideline recommendations, by each guideline. Thus, this table allows the reader to see how frequently each domain was addressed across the reviewed guidelines.

TABLE 2-1. Dementia Care Framework Components
1. Detection of Possible Dementia Examine for cognitive impairment when there is a decline from previous function in daily activities, occupational ability, or social engagement.
2. Diagnosis Obtain a comprehensive evaluation and diagnosis from a qualified provider when cognitive impairment is suspected.
3. Assessment and Ongoing Reassessment Assess cognitive status, functional abilities, behavioral and psychological symptoms of dementia, medical status, living environment, and safety. Reassess regularly and when there is a significant change in condition.
4. Care Planning Design a care plan that will meet care goals, satisfy the person's needs, and maximize independence.
5. Medical Management Deliver timely, individualized medical care to the person with dementia, including prescribing medication and managing comorbid medical conditions in the context of the person's dementia.
6. Information, Education, and Informed and Supported Decision Making Provide information and education about dementia to support informed decision making including end-of-life decisions.
7. Acknowledgement and Emotional Support for the Person with Dementia Acknowledge and support the person with dementia. Allow the person's values and preferences to guide all aspects of the care. Balance family involvement with individual autonomy and choice.
8. Assistance for the Person with Dementia with Daily Functioning and Activities Ensure that persons with dementia have sufficient assistance to perform essential health-related and personal care activities and to participate in activities that reflect their preferences and remaining strengths; help to maintain cognitive, physical, and social functioning for as long as possible; and support quality of life. Provide help as needed with medication management and pain control.
9. Involvement, Emotional Support, and Assistance for Family Caregiver(s) Involve caregiver in evaluation, decision making, and care planning and encourage regular contact with providers. Provide culturally sensitive emotional support and assistance for the family caregiver(s).
10. Prevention and Mitigation of Behavioral and Psychological Symptoms of Dementia Identify the causes of behavioral and psychological symptoms, and use nonpharmacological approaches first to address those causes. Avoid use of antipsychotics and other medications unless the symptoms are severe, create safety risks for the person or others, and have not responded to other approaches. Avoid physical restraints except in emergencies.
11. Safety for the Person with Dementia Ensure safety for the person with dementia. Counsel the person and family as appropriate about risks associated with wandering, driving, and emergency preparedness. Monitor for evidence of abuse and neglect.
12. Therapeutic Environment, Including Modifications to the Physical and Social Environment of the Person with Dementia Create a comfortable environment, including physical and social aspects that feel familiar and predictable to the person with dementia and support functioning, a sustained sense of self, mobility, independence, and quality of life.
13. Care Transitions Ensure appropriate and effective transitions across providers and care settings.
14. Referral and Coordination of Care and Services that Match the Needs of the Person with Dementia and Family Caregiver(s) and Collaboration Among Agencies and Providers Facilitate connections of persons with dementia and their family caregivers to individualized, culturally and linguistically appropriate care and services, including medical, other health-related, residential, and home and community-based services. When more than 1 agency or provider is caring for a person with dementia, collaborate among the various agencies and providers to plan and deliver coordinated care.

 

TABLE 2-2. Detailed Dementia Care Framework Components
1. Detection of Possible Dementia Examine for cognitive impairment when there is a decline from previous function in daily activities, occupational ability, and/or social engagement (3, 4, 5, 6, 8, 12, 14, 17, 18, 27, 32, 33, 37).
  • 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).
2. Diagnosis Obtain a comprehensive evaluation and diagnosis from a qualified provider when cognitive impairment is suspected (5, 6, 8, 11, 12, 14, 16, 17, 18, 22, 25, 27, 30, 32, 35, 36, 37).
  • 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).
3. Assessment and Ongoing Reassessment Assess cognitive status, functional abilities, behavioral and psychological symptoms of dementia, medical status, living environment, and safety. Reassess regularly and when there is a significant change in condition (1, 2, 3, 5, 6, 7, 10, 11, 12, 13, 14, 15, 16, 17, 19, 21, 22, 23, 25, 27, 29, 30, 32, 33, 35, 36, 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).
4. Care Planning Design a care plan that will meet care goals, satisfy the person's needs, and maximize independence (1, 2, 3, 5, 7, 9, 10, 11, 15, 17, 18, 23, 27, 30, 35, 37).
  • 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).
5. Medical Management Deliver timely, individualized medical care to the person with dementia including prescribing medication and managing comorbid medical conditions in the context of the person's dementia (1, 3, 4, 5, 7, 8, 10, 11, 12, 16, 17, 22, 23, 24, 25, 26, 27, 30, 31, 32, 33, 34, 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).
6. Information, Education, and Informed and Supported Decision Making Provide information and education about dementia to support informed decision making including end-of-life decisions (1, 2, 3, 5, 6, 7, 8, 10, 11, 13, 14, 16, 17, 20, 22, 24, 27, 29, 30, 32, 33, 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).
7. Acknowledgement and Emotional Support for the Person with Dementia Acknowledge and support the person with dementia. Allow the person's values and preferences to guide all aspects of the care. Balance family involvement with individual autonomy and choice (1, 2, 3, 5, 6, 7, 14, 15, 16, 18, 19, 21, 23, 25, 27, 30, 31, 33, 34, 35).
  • 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).
8. Assistance for the Person with Dementia with Daily Functioning and Activities Ensure that persons with dementia have sufficient assistance to perform essential health-related and personal care activities and to participate in activities that reflect their preferences and remaining strengths; help to maintain cognitive, physical, and social functioning for as long as possible; and support quality of life. Provide help as needed with medication management and pain control (1, 2, 3, 5, 9, 11, 15, 17, 30, 33, 34, 35, 37).
  • 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).
9. Involvement, Emotional Support, and Assistance for Family Caregiver(s) Involve caregiver in evaluation, decision making, and care planning and encourage regular contact with providers. Provide culturally sensitive emotional support and assistance for the family caregiver(s) (2, 3, 8, 10, 11, 17, 19, 21, 22, 23, 27, 30, 32, 33, 35).
  • 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 culturally sensitive emotional support and assistance for the family caregiver(s) (2, 3, 4, 11, 14, 15, 17, 27, 31, 35, 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).
10. Prevention and Mitigation of Behavioral and Psychological Symptoms of Dementia Identify the causes of behavioral and psychological symptoms and use nonpharmacological approaches first to address those causes. Avoid use of antipsychotics and other medications unless the symptoms are severe, create safety risks for the person or others, and have not responded to other approaches. Avoid physical restraints except in emergencies (1, 3, 4, 5, 7, 10, 15, 17, 22, 25, 27, 28, 29, 30, 33, 34, 36, 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).
11. Safety for the Person with Dementia Ensure safety for the person with dementia. Counsel the person and family as appropriate about risks associated with wandering, driving, and emergency preparedness. Monitor for evidence of abuse and neglect (1, 3, 10, 11, 16, 17, 29, 33, 34, 36, 37).
  • 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).
12. Therapeutic Environment, Including Modifications to the Physical and Social Environment of the Person with Dementia Create a comfortable environment, including physical and social aspects that feel familiar and predictable to the person with dementia and support functioning, a sustained sense of self, mobility, independence, and quality of life (1, 3, 4, 5, 9, 15, 17, 33, 34, 35).
  • 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).
13. Care Transitions Ensure appropriate and effective transitions across providers and care settings (2, 3, 4, 13, 20, 24).
  • 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).
14. Referral and Coordination of Care and Services that Match the Needs of the Person with Dementia and Family Caregiver(s) and Collaboration Among Agencies and Providers Facilitate connections of persons with dementia and their family caregivers to individualized, culturally and linguistically appropriate care and services, including medical, other health-related, residential, and home and community-based services. When more than 1 agency or provider is caring for a person with dementia, collaborate among the various agencies and providers to plan and deliver coordinated care (3, 10, 11, 13, 17, 18, 24, 25, 30, 33, 34, 35, 37).
  • 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).

When more than 1 agency or provider is caring for a person with dementia, collaborate among the various agencies and providers to plan and deliver coordinated care (3, 13, 16, 27, 34).

  • 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).
NOTE: Parenthetical numbers are references and can be found in Section 2.3.

2.3. Care Components References

  1. Alzheimer's Association. (2007). Dementia Care Practice Recommendations for End-of-Life Care. Available at http://www.alz.org/national/documents/brochure_DCPRphase3.pdf.

  2. Alzheimer's Association. (2009a). Dementia Care Practice Recommendations for Assisted Living and Nursing Homes. Available at http://www.alz.org/national/documents/brochure_DCPRphases1n2.pdf.

  3. Alzheimer's Association. (2009b). Dementia Care Practice Recommendations for Professionals Working in a Home Setting. Available at http://www.alz.org/national/documents/Phase_4_Home_Care_Recs.pdf.

  4. American College of Emergency Physicians, American Geriatrics Society, Emergency Nurses Association, Society for Academic Emergency Medicine. (2013). Geriatric Emergency Department Guidelines: Delirium and Dementia in the Geriatric Emergency Department. Available at https://www.ena.org/about/media/PressReleases/Documents/Geri_ED_Guidelines.pdf.

  5. American Medical Directors Association. (2012). Dementia in the Long-Term Care Setting. Columbia, MD.

  6. American Psychological Association. (2012). Guidelines for the evaluation of dementia and age-related cognitive change. American Psychologist, 67(1), 1-9.

  7. British Columbia Ministry of Health. (2012). Best Practice Guideline for Accommodating and Managing Behavioural and Psychological Symptoms of Dementia in Residential Care. A Person-Centered Interdisciplinary Approach. Available at http://www.health.gov.bc.ca/library/publications/year/2012/bpsd-guideline.pdf.

  8. British Columbia Ministry of Health. (2014). Cognitive Impairment: Recognition, Diagnosis and Management in Primary Care. Available at http://www2.gov.bc.ca/assets/gov/health/practitioner-pro/bc-guidelines/cogimp-full-guideline.pdf.

  9. Bryant, N., Alonzo, T., & Long, C.O. (2010). Palliative care for advanced dementia. FutureAge, November/December, 32-38.

  10. California Workgroup on Guidelines for Alzheimer's Disease Management. (2008). Guideline for Alzheimer's Disease Management. Available at http://www.alzgla.org/professionals/guidelines-for-ad-management/.

  11. Callahan, C.M., Sachs, G.A., LaMantia, M.A., Unroe, K.T., Arling, G., & Boustani, M.A. (2014). Redesigning systems of care for older adults with Alzheimer's disease. Health Affairs, 33(4), 626-632.

  12. Clinical Research Center for Dementia of South Korea. (2011). Clinical Practice Guideline for Dementia. Part I: Diagnosis and Evaluation. Seoul (South Korea): Clinical Research Center for Dementia of South Korea. Available at https://www.guideline.gov/content.aspx?id=34444.

  13. Coleman, L., & Mitchell, S. (2015). Advanced Dementia Expert Panel Summary and Key Recommendations. PowerPoint presentation to the Advisory Council on Alzheimer's Research, Care, and Services, January 26. Available at https://aspe.hhs.gov/advisory-council-january-2015-meeting-presentation-advanced-dementia-panel.

  14. Cordell, C.B., Borson, S., Boustani, M., Chodosh, J., Reuben, D., Verghese, J., Thies, W., & Fried, L.B. (2013). Alzheimer's Association recommendations for operationalizing the detection of cognitive impairment during the Medicare annual wellness visit in a primary care setting. The Medicare Detection of Cognitive Impairment Workgroup. Alzheimer's and Dementia, 9(2), 141-150. Available at http://www.alz.org/documents_custom/jalz_1528.pdf.

  15. Dementia Initiative. (2013). Dementia Care: The Quality Chasm. Available at http://www.ccal.org/wp-content/uploads/DementiaCareTheQualityChasm_020413.pdf.

  16. De Sanidad, P.S. (2014). Clinical Practice Guideline on the Comprehensive Care of People with Alzheimer's Disease and Other Dementias. Available at https://www.researchgate.net/profile/Josep_Lluis_Conde-Sala/publication/260071423_Clinical_Practice_Guideline_on_the_Comprehensive_Care_of_People_with_Alzheimer's_Diseas_and_other_Dementias._English_version/links/00b4952f4c6575bef0000000.pdf.

  17. Fletcher, K. (2012). Recognition and management of dementia. In Boltz, M., Capezuti, E., Fulmer, T., & Zwicker, D. (Eds.), Evidence-based Nursing Protocols for Best Practice (pp. 163-185). New York, NY: Springer Publishing Company.

  18. Gerontological Society of America Workgroup on Cognitive Impairment Detection and Earlier Diagnosis. (2015). Report and Recommendations. Available at http://www.helpforalzheimersfamilies.com/wp-content/uploads/2015/09/GSA_Cognitive_Impairment_2015_Report.pdf.

  19. Hadjistavropoulos, T., Fitzgerald, T.D., & Marchildon, G.P. (2010). Practice guidelines for assessing pain in older persons with dementia residing in long-term care facilities. Physiotherapy Canada, 62(2), 104-113.

  20. Healthy People 2020. (2014). Dementias including Alzheimer's Disease. Available at http://www.healthypeople.gov/2020/topics-objectives/topic/dementias-including-alzheimers-disease/objectives.

  21. Herr, K., Coyne, P.J., McCaffery, M., Manworren, R., & Merkel, S. (2011). Pain assessment in the patient unable to self-report: Position statement with clinical practice recommendations. Pain Management Nursing, 12(4), 230-250.

  22. Hort, J., O'Brien, J.T., Gainotti, G., Pirttila, T., Popescu, B.O., Rektorova, I., Sorbi, S., Scheltens, P., & European Federation of Neurological Sciences (EFNS) Scientist Panel on Dementia. (2010). EFNS guidelines for the diagnosis and management of Alzheimer's disease. European Journal of Neurology, 17(10), 1236-1248.

  23. Lazaroff, A., Morishita, L., Schoephoerster, G., & McCarthy, T. (2013). Using dementia as the organizing principle when caring for patients with dementia and comorbidities. Minnesota Medicine, 96(1), 41-46.

  24. Mitchell, S.L. (2015). Palliative care of patients with advanced dementia. UpToDate. Available at http://www.uptodate.com/contents/palliative-care-of-patients-with-advanced-dementia#H423254626.

  25. Moore, A., Patterson, C., Lee, L., Vedel, I., & Bergman, H. (2014). Fourth Canadian consensus conference on the diagnosis and treatment of dementia: Recommendations for family physicians. Canadian Family Physician, 60(5), 433-438.

  26. National Committee for Quality Assurance, Healthcare Effectiveness Data and Information Set (HEDIS) Measurement Set. (2015). HEDIS Summary Table of Measures, Product Lines, and Changes (p. 6). Available at http://www.ncqa.org/Portals/0/HEDISQM/Hedis2015/List_of_HEDIS_2015_Measures.pdf.

  27. National Institute for Health and Clinical Excellence, National Collaborating Centre for Mental Health. (2007). Dementia: A NICE-SCIE Guideline on Supporting People with Dementia and Their Carers in Health and Social Care. Available at https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0015356/pdf/PubMedHealth_PMH0015356.pdf.

  28. Nursing Home Compare. (2015). What Information Can I Get About Quality Measures? Available at https://www.medicare.gov/NursingHomeCompare/About/Quality-Measures-Info.html.

  29. Physician Quality Reporting System (PQRS). (2014). PQRS 2105 Measure List, Measure Numbers 25, and 149-157. Available at https://www.cms.gov/apps/ama/license.asp?file=/PQRS/Downloads/PQRS_2015_Measure-List_111014.zip.

  30. Rabins, P.V., Blacker, D., Rovner, B.W., Rummans, T., Schneider, L.S., Tariot, P.N., & Fochtmann, L.J. (2007). American Psychiatric Association practice guideline for the treatment of patients with Alzheimer's disease and other dementias. Second ed. American Journal of Psychiatry, 164(12 Suppl), 5-56.

  31. Rabins, P.V., Rovner, B.W., Rummans, T., Schneider, L.S., & Tariot, P.N. (2014). Guideline Watch (October 2014): Practice Guideline for the Treatment of Patients with Alzheimer's Disease and Other Dementias. American Psychiatric Association. Available at http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/alzheimerwatch.pdf.

  32. Regional Health Council. (2011). Dementia. Diagnosis and Treatment. Milan (Italy): Regione Toscana, Consiglio Sanitario Regionale. Accessible at https://www.guideline.gov/content.aspx?id=32599 33.

  33. Registered Nurses' Association of Ontario (RNAO). (2010). Caregiving Strategies for Older Adults with Delirium, Dementia and Depression 2010 Supplement. Toronto (Ontario). Available at http://search.library.utoronto.ca/details?9121533&uuid=b6f6302d-173d-4072-b0e8-28737bad73f4.

  34. Sadowski, C.H., & Galvin, J.E. (2012). Guidelines for the management of cognitive and behavioral problems in dementia. Journal of the American Board of Family Medicine, 25(3), 350-366.

  35. Schaber, P. (2010). Occupational Therapy Practice Guidelines for Adults with Alzheimer's Disease and Related Disorders. Bethesda, MD: American Occupational Therapy Association, Inc.

  36. Sorbi, S., Hort, J., Erkinjuntti, T., Fladby, T., Gainotti, G., Gurvit, H., & Religa, D. (2012). EFNS-ENS guidelines on the diagnosis and management of disorders associated with dementia. European Journal of Neurology, 19(9), 1159-1179.

  37. Third Canadian Consensus Conference on Diagnosis and Treatment of Dementia. (2007). Available at http://www.cccdtd.ca/pdfs/Final_Recommendations_CCCDTD_2007.pdf.