Examining Models of Dementia Care: Final Report. 3. CASE STUDIES/SITE VISITS

09/01/2016

To assess how programs providing dementia care services were addressing the care components that had been identified, we conducted five case studies of established programs. The five case studies were selected out of an original pool of 55 dementia care interventions that were identified, almost all of which had been shown to produce positive effects mostly in randomized controlled trials that had been published in peer-reviewed journals. Appendix B provides a listing of the 55 interventions and information about them, including a journal citation reporting on the effectiveness of the intervention, if available, and a high-level description of each intervention and its setting. This list was narrowed to ten possible active programs (since not all interventions were actually being used in ongoing programs), and then five sites were chosen by the HHS Office of the Assistant Secretary for Planning and Evaluation (ASPE), based on recommendations from RTI.

With only five case studies, it was not possible to represent the full array of existing programs to help persons with dementia and their family caregivers. The five sites were chosen primarily to represent the range of approaches to dementia care, especially by setting. More widely known programs were selected over less known programs, although judgments about these characteristics were based on the project team and ASPE's general knowledge about programs rather than any rigorous evaluation method. The objective in selecting highly regarded and widely known programs was to increase the likelihood that the programs would address many or most of the components. With one exception, the programs used interventions that had been found to produce some positive outcomes in randomized controlled trials.

The case studies were selected to assess a range of approaches and settings, but with only five site visits, the variability in types of programs was limited. One of the programs initially selected for a case study declined to participate, and another program was chosen to replace it. Four of the case studies were conducted in person over 2 days, and one was conducted by telephone because of the large travel distances involved. The case studies were conducted in March-May 2016 with two-person RTI teams. Structured discussion guides were developed and somewhat tailored to each program; the general domains shared ahead of time with the program administrators. Appendix C is an example of one of the discussion guides, which varied with each program. The guides provided a set of categories for discussion, but the actual questions asked varied greatly according to the content of the programs and the person being interviewed.

The programs at which case studies were conducted were:

  • BRI Care Consultation™ in Cleveland, Ohio;
  • Comfort Matters™ in Phoenix, Arizona;
  • Healthy Aging Brain Center in Indianapolis, Indiana;
  • MIND at Home in Baltimore, Maryland; and
  • Rosalynn Carter Institute for Caregiving (RCI) Resources for Enhancing Alzheimer's Caregiver Health (REACH) in Americus, Georgia.

     

Four of the programs are based on at least one prior randomized controlled trial. Of those four programs, three are currently in the implementation phase and not involved in a trial. The fourth program, MIND at Home, is currently being tested in a Center for Medicare and Medicaid Innovation and HHS National Institute on Aging-funded (NIA-funded) demonstration project. The fifth program, Comfort Matters™, has not been tested in a randomized controlled trial.

Table 3-1 presents a brief description of the five case study dementia care programs. The case study programs included one medical clinic-based setting, one assisted living/nursing home setting, and three community-based programs. Table 3-2 summarizes how the programs address the 14 care components.

TABLE 3-1. Description of Dementia Care Programs Visited
Dementia Care Program Target Population Setting Number of People Served Program Description Statistically Significant (p= or <0.05) Outcomes from
Selected Citied Articles in Appendix B
BRI Care Consultation™ (Cleveland, Ohio area) People with dementia and family caregivers Telephone contacts with people living at home Over 4,000 families served through 10 research studies Care consultants assist people with dementia and family caregivers with developing and achieving personalized goals. The program has 3 main components: initial assessment, action plan, and ongoing maintenance and support, which includes monitoring and follow-up with reassessment as needed. The CCIS is an important component of the program and contains a variety of tools to ensure fidelity to the model including the assessment trigger and follow-up questions, action step template, progress report format, and educational resources on a variety of topics.

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

Bass et al. (2015)

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

Bass et al. (2013)

  • Reduced caregiver depression
  • Increased caregiver use of support services
  • Reduced caregiver unmet need
Comfort Matters™ (Phoenix, Arizona) People with dementia Assisted living and nursing home settings Not provided A comfort-focused and person-directed approach to care for people with dementia that extends to any stage of dementia and engages the person as an expert in his or her own comfort. The program teaches long-term care staff, medical providers, and families about the palliative approach to dementia care with the goal of relieving physical pain, behavioral symptoms, and stress using 5 key concepts to meet the medical, physical, social, spiritual, and emotional needs of people with dementia. No available studies provide statistical testing of the impact of the intervention. Descriptive data is available (Kuhn and Forrest, 2012).
Healthy Aging Brain Center (Indianapolis, Indiana) People with dementia and family caregivers Clinic and home 703 in the home portion of the program and 1,500 in the clinic portion of the program The Healthy Aging Brain Center was developed as a dementia and depression care program that aims to reduce dementia-related burden among individuals with dementia and their caregivers. The program operates within Eskenazi Health System, a safety-net integrated health care system in Indianapolis, Indiana and delivers services through clinic-based and home-based approaches. The program was initiated in 2008 as a clinic-based program, designed to serve individuals with dementia and their caregivers in the clinic. In 2012, with support from a Health Care Innovation Award from the Center for Medicare and Medicaid Innovation, the program expanded to serve persons with dementia or depression in their homes (LaMantia et al., 2015).

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
MIND at Home (Baltimore, Maryland) People with dementia and family caregivers Telephone, e-mail, mail, and in-person contacts with people living at home 408 individuals were enrolled, approximately 27% of people initially referred MIND at Home is 2 closely related studies funded by the NIA and the CMS. The care coordination intervention is primarily provided by noncredentialed memory care coordinators, but there is substantial RN involvement and a geropsychiatrist plays a prominent medical role and is available for consultations. The manualized care coordination protocol consist of 4 key components: identification of needs and individualized care planning based on the Johns Hopkins Dementia Care Needs Assessment to address unmet needs and to match the priorities and preferences of the patient and family; provision of dementia education and skill-building strategies; coordination, referral, and linkage to services; and care monitoring. Following a detailed assessment, a care plan is developed with the caregiver and the person with dementia. A key component of the program is the use of a computerized resource system that is able to identify resources and recommendations for identified problems. Following the establishment of the care plan, care coordinators work with the caregiver and person with dementia to implement the plan, with most contact being by telephone, mail and e-mail. In-person meetings can occur at any time, but are built into the protocol at 9 months and 18 months.

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
RCI REACH (Georgia) Family caregivers of people with dementia In-person or telephone meetings for people living at home No exact number provided--RCI provides REACH training to over 20 agencies in the United States that are implementing the program RCI REACH is a 6-month, 12-session intervention that focuses on the overall well-being of family caregivers for people with dementia. Caregiver coaches serve as the interventionists for the program and meet with caregivers in individualized sessions to provide them with information and techniques to manage their caregiving activities. Interventionists conduct a risk appraisal assessment related to caregiver depression, burden, health, social support, self-efficacy and desire to institutionalize, and any behavioral issues of the person with dementia. The results of the risk assessment guide the remainder of the intervention sessions with each session focused on assisting the caregiver with an issue identified in the risk assessment.

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

 

TABLE 3-2. Summary of How the Dementia Care Models Address the Care Components
Care Components BRI Care Consultation™ Comfort Matters™ Healthy Aging Brain Center MIND at Home RCI REACH
1. Detection of Possible Dementia There is no specific protocol for screening or detection of possible dementia. MMSE is used at admission. A formal cognitive screen, the Montreal Cognitive Assessment, and comprehensive diagnostic evaluation is conducted if change in status is observed. MMSE is used for individuals enrolled in the home portion of the program. Protocols for clinic portion of the program include standardized intake interview and clinic visit for diagnostic evaluation, and second clinic visit to provide the diagnosis. Initial screening for the program is conducted using a simple screening tool administered over the phone by students. A comprehensive assessment of cognitive status using the MMSE and other instruments is part of the initial assessment. FAST© Scale is used to determine a person's stage of dementia.
2. Diagnosis Care consultants ask about memory problems and provide referrals to health care providers trained in diagnosis. Geriatrician on staff works with the interdisciplinary team and family to conduct a comprehensive diagnostic evaluation. Diagnostic tests and evaluation are conducted in the clinic, and some form of problem identification has already been made for patients prior to their entry into the program; for a small proportion of clinic patients who are referred from the home-based program, the diagnosis is made in the clinic. Home-based program is not involved in the diagnosis of dementia. The clinical team will refer the participant to their primary care physician for a more thorough workup or to the Johns Hopkins University memory clinic if there is an usual presentation of the disease or if there is a question about the diagnosis, but a formal diagnosis is not required to participate in the program. Does not directly get involved in the diagnosis of dementia; caregiver coaches encourage obtaining a formal diagnosis from a physician.
3. Assessment and Ongoing Reassessment Initial assessment is completed over a 4-month period to allow for building rapport and trust and addressing immediate concerns. Periodic reassessment every 6 or 12 months or more often if there is a persistent problem. Person's care needs are assessed through a pre admission meeting, MMSE, nursing assessment, medical record review, dietary screening, social work assessment, inventory of activities, medication review, and medical history and physical exam. For the home portion of the program, a care coordinator assistant meets with the individual, caregiver, or both to conduct an initial assessment. In the clinic portion of the program, the first assessment is conducted during the intake interview over the phone with the caregiver. A comprehensive initial assessment of the person with dementia and his or her caregiver is conducted by a nurse and a memory care coordinator in the home setting. In addition to a social assessment of the person with dementia and the caregiver, a physical exam is conducted by the nurse or other medical clinician. Another full assessment is conducted at 9 and 18 months. Assess caregiver risks through a Risk Priority Inventory--examines caregiver depression, burden, health, social support, self-efficacy, desire to institutionalize, and behavioral problems of the person with dementia, also includes a home safety assessment; no formal assessment of the person with dementia.
4. Care Planning Person living with dementia or their caregiver identifies medical and nonmedical concerns during the initial assessment and the care consultant helps with formulating goals with action steps. Program conducts a care planning meeting within 14 days of new admission; care plans are updated quarterly and whenever there is a significant change in medical condition or cognitive status. For the home portion of the program, care planning meetings are conducted following the home visits. For the clinic portion of the program, care planning starts with the family conference, which is aimed to educate the family about the patient's dementia and help caregivers understand more about the disease, including how the disease likely will progress, and to identify treatment goals. After the care plan is developed, a detailed letter with the recommendations of the care team is sent to the caregiver. In developing their recommendations, the care team relies heavily on a web-based care management database that contains actions log and an electronic library of available resources for each need. The care coordinator meets with the caregiver and person with dementia discuss the recommendations and establish a plan of action. No formal care planning process for the person with dementia; program designed around 5 main issues, which are addressed by the coach: safety, caregiver health, problem-solving, caregiver well-being, and social support.
5. Medical Management Does not directly address medical management issues. Medical management is overseen by the interdisciplinary team, which includes a licensed geriatrician. Medical management usually defaults to the individual's primary care physician, who is usually within the Eskenazi Health System. Medical management is an important component of the project, with RNs and a geriatric psychiatrist playing important clinic roles, but the project does not provide medical care. The clinical team and care coordinators teach caregivers to monitor symptoms and behavior changes and make adjustments to the home environment to avoid falls. With permission, the care plan is sent to the primary care physician. Does not address medical management issues; if such issues arise coaches will work with caregivers to get appropriate assistance.
6. Information, Education, and Informed and Supported Decision Making The CCIS has educational resources and materials that are searchable by keyword and can be sent via e-mail or mail. Care consultants facilitate informed and supported decision making by working with family members and friends to plan for future caregiving and other care needs. The program supports the individual in decision making as much as possible and encourages family caregivers to be advocates for the resident. The program provides educational resources on topics such as understanding dementia behaviors, disease management strategies, behavioral techniques to help manage behavioral symptoms, coping strategies for caregivers to maintain their physical and emotional health, and community resources for dementia care. The program provides educational materials, and coaching to the person with dementia and the caregiver. Much of the education takes place by phone, although care coordinators do make some in-person visits. The program maintains a database of educational materials. The information is to help participants make informed decisions regarding needed care. Provided to caregivers throughout the intervention through the Dealing with Dementia guide, videos, webinars, and handouts.
7. Acknowledgement and Emotional Support for the Person with Dementia Care consultants involve the person living with dementia whenever possible. The process works best if the person with dementia has a caregiver involved. Provided through positive interactions and by acknowledging a resident's experience in the present moment. Provided by care coordinator assistants through positive interactions; program also encourages the patients to reach out to the resources within the Eskenazi Health System or within the community for emotional support. Memory care coordinators involve the person with dementia when possible, but the interactions are primarily by phone with the caregivers. Does not directly provide for the person with dementia; program indirectly addresses these issues by providing assistance to caregivers.
8. Assistance for the Person with Dementia with Daily Functioning and Activities Care consultants do not assist the person directly with daily functioning and activities. Daily activities including personal care are resident-driven based on preferences and prior routines. Screening for ADLs is included in the home portion of the program. The clinic portion of the program is not involved in providing assistance with daily functioning and activities. The assessment identifies people who need help with daily functioning, but the program does not directly provide help with the ADLs or the IADLs. Memory care coordinators will help to connect participants with programs that provide these services, but many have waiting lists. If caregiver identifies daily functioning and activities of person with dementia as one of the target areas in the risk appraisal, the caregiver coach will address these issues.
9. Involvement, Emotional Support, and Assistance for Family Caregiver(s) Caregivers are involved in all aspects of the program and work closely with the care consultant to determine areas of concern and action steps. Care consultants listen to concerns and help develop proactive response. Ongoing communication with family members and building strong partnerships in the care of the resident with dementia is integral to the success of the program. Caregivers are involved throughout the care process. Caregivers are encouraged to accompany the individuals during the clinic visits and home visits. The program works with caregivers to provide them with emotional support. Contact is largely by telephone or email and is part of the process of building trust and relationship with the participants. Care coordinators talk by phone with caregivers at least once a month. Including caregivers and providing them with emotional support is the basis of the program and conducted throughout the intervention.
10. Prevention and Mitigation of Behavioral and Psychological Symptoms of Dementia Care consultants do not assist the person directly with behavioral and psychological symptoms of dementia or train family caregivers on effective approaches. Staff are trained that behavior is a form of communication for residents who may have difficulty expressing their needs verbally. A tool called the HABC monitor is used to measure the cognitive, functional, behavioral, and psychological symptoms of dementia. Antipsychotic medications are avoided for as long as possible. The care team assesses the problem behavior, how often it occurs, and what triggers the behavior, ruling out medical problems. Care coordinators offer coaching and modeling for problematic behaviors and provide skills training. The CMS-funded participants are also offered the TAP, a home-based occupational therapy intervention. Caregivers learn a 9-step problem-solving process to assist them in addressing behavioral and psychological symptoms of dementia.
11. Safety for the Person with Dementia Care consultants can respond to a variety of safety concerns including home safety, elder abuse, falls, or inability to maintain the home. For residents who are at risk of a fall, the program uses lowered beds; hallways and public spaces are kept free of unnecessary clutter; also at night, the corridors and access to the bathroom are well-lit. For the home portion of the program, the initial assessment includes a home safety evaluation. The clinic portion of the program is not involved in providing assistance with safety for the individual with dementia. The home environment is a major focus of the program because falls are a major cause hospitalization and other transitions. During the home assessment, the care team identifies any fall safety issues, such as throw rugs and will discuss eliminating them with the caregivers as part of the care plan. The program also addresses wandering, driving, kitchen safety, and guns. Initial Risk Priority Inventory includes a home safety assessment examining issues such as wandering, presence of firearms in the home, and suicide.
12. Therapeutic Environment, Including Modifications to the Physical and Social Environment of the Person with Dementia Care consultants can access information and counsel the person with dementia or family caregiver on a variety of ways to ensure therapeutic environment. A comforting and familiar environment is created by inviting residents to bring their furniture, pictures, and decorations from home. For the home portion of the program, the HABC monitor is used to identify issues related to social and physical environment. The clinic portion is not involved in the physical and social environment of the person with dementia. MIND at Home works with caregivers to make the home setting pleasant to the person with dementia, but it is not a major focus. Caregiver coach will work with the caregiver to address environmental issues if they arise.
13. Care Transitions If there is a significant change in medical condition or living situation, a care consultant can provide coaching and ongoing decision making support to ease transitions. Staff works with medical team to ensure smooth transitions from 1 setting into another. The program assists patient and caregivers with transitions from the hospital or emergency department to the home. A major goal of MIND at Home is to reduce transitions to hospitals, nursing homes, and assisted living facilities. In their view, the main controllable factors related to hospitalizations are problems with home safety, including falls; inadequate medication adherence and poor prescribing on the part of physicians; and missing medical appointments. The program attempts to address these factors by working with the caregivers. Does not explicitly address; general information is in the Dealing with Dementia guide.
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 Partners in Dementia Care, a version of the model, use a formal collaborative partnership between health care organization and community service organization. Does not have formal referral and coordination of care protocol. Does not have specific protocols for collaboration among agencies and providers. Does not have formal referral and coordination of care protocol. Since MIND at Home does not directly provide services, it refers caregivers to organizations that may be able to provide them with the services they need. There is no formal referral and coordination of care protocol; caregiver coaches can provide caregivers with information for needed resources and services.

3.1. BRI Care Consultation™

3.1.1. Description of Model

The Benjamin Rose Institute on Aging (BRIA) in Cleveland, Ohio, developed BRI Care Consultation™ to empower people with dementia and their caregivers to take an active role in their health and well-being. Care consultants assist people with dementia and family caregivers with developing and achieving personalized goals. The program has three main components: initial assessment, action plan, and ongoing maintenance and support, which includes monitoring and follow-up with reassessment, as needed. The Care Consultation Information System (CCIS) is an important component of the program and contains a variety of tools to ensure fidelity to the model including the assessment trigger and follow-up questions, action step template, progress report format, and educational resources on a variety of topics.

The intervention is delivered by BRIA-trained care consultants via telephone, regular mail, and email with in-person contact rarely provided. Care consultants usually have degrees in social work or nursing but other helping professionals have also been trained in the model program. Care consultants manage a caseload of up to 150 families, with contact with a client varying from once every 3 months to a few times a week depending on the situation. The standard protocol for the model requires three contacts in the first month; a minimum of at least one contact per month for months 2, 3, 4, and 5; and a minimum of one contact per month at month 6 and then every 3 months for the duration of enrollment.

BRI Care Consultation™ has been studied for many years in various local and national research projects and is recognized as an evidence-based program by the RCI and the Administration on Aging. BRIA provides training to organizations and care consultants on the BRI Care Consultation™ philosophy, service delivery protocols, and use of the CCIS along with ongoing individual coaching, refresher training, and fidelity reviews.

Information for this case study was gathered by reviewing published articles, the BRIA website, and by conducting an in-person site visit at the institute on April 28-29, 2016, in Cleveland, Ohio. As part of the site visit, RTI staff interviewed BRI Care Consultation™ staff and nearby organizations that are licensed by BRIA to implement the model including the Cleveland VA Medical Center, Western Reserve Area Agency on Aging, Alzheimer's Association, Cleveland Chapter, and Alzheimer's Association, Greater East Ohio Chapter.

3.1.2. Dementia Care Framework Components

Detection of Possible Dementia

BRI Care Consultation™ does not have a specific protocol for detection of possible dementia.

Diagnosis

Care consultants ask about memory problems during the initial assessment and ongoing reassessment to determine whether the client wants more information or more tests to understand memory problems. If the client responds affirmatively, the care consultant will ask follow-up questions and provide referrals to health care providers trained in diagnosis.

Assessment and Ongoing Reassessment

The initial assessment is completed over the course of 4 months, enabling the care consultant to build rapport and trust during several contacts. This prolonged assessment period also allows the care consultant to address immediate concerns while doing a comprehensive assessment. Through guided conversation the care consultant assists the person with dementia or caregiver to determine specific action steps with completion dates and then coaches the person with dementia and caregiver toward meeting his or her goals. Ongoing maintenance and support involves follow-up on progress made and periodic reassessment every 6 or 12 months or more often if there is a persistent problem.

The initial assessment covers 24 domains for people with dementia (e.g., activities of daily living [ADLs], memory problems, difficult behaviors) and 11 domains for caregivers (e.g., financial concerns, relationship strain, sleep). If the client indicates a concern with the domain, the care consultant may ask follow-up questions to gather more information. This additional information will then help to inform how best to coach the clients on possible solutions. The care consultants interviewed during the site visit consistently spoke about the assessment process as "free form" and driven by conversation because there is no requirement for the domains be addressed in any particular order during the 4-month assessment period. The care consultant completes the initial assessment in the CCIS by checking off each trigger question that is relevant to the client. Trigger questions and detailed follow-up questions can be revisited at any time, and each reassessment is recorded in the CCIS to capture changes over time and the progress made.

Care Planning

The person living with dementia or his or her caregiver identifies medical and nonmedical concerns during the initial assessment, and the care consultant helps them formulate goals with action steps to address those concerns. Action steps are individualized to the needs and preferences of the person living with dementia and caregiver. Each action step in the plan designates a person responsible for completion of a task and a completion date.

Care consultants receive extensive training and coaching from the BRI staff on writing action steps that are manageable and measureable to help the clients achieve their goals. During a follow-up call, progress for each step is noted in the action plan, and a report is mailed or e-mailed to the client. With the client's approval, the action plan can also be sent to the primary care provider (PCP). According to care consultants, family members express an increased sense of accomplishment seeing their progress report after the call with the care consultant. If an action step is not accomplished, the care consultant will help to break down the action step into smaller, more manageable steps and coach the client through each step. The process of action planning is continuous and builds on both previously established action steps and developing new ones. Examples of action steps are in Table 3-3.

TABLE 3-3. Action Steps Examples
Person Living with Dementia
  • 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
Family Caregiver
  • 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
Care Consultant
  • 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
Friend/Neighbor
  • 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

Medical Management

BRI Care Consultation™ does not directly address medical management issues; however, during the assessment and reassessment, a care consultant will ask if the client has experienced difficulties with coexisting medical conditions and will assist the client with getting medical care. Care consultants will coach the client on ways to prepare for a medical appointment and communicate concerns with the PCP.

Information, Education, and Informed and Supported Decision Making

The CCIS has a full array of educational resources and materials that are searchable by keyword and can be sent via e-mail or regular mail to the person with dementia or family caregiver. Currently, the system contains approximately 400 resources that are continually updated and maintained. These resources address a wide range of topics such as understanding dementia behaviors, communicating with your doctor, managing diabetes, and advance planning. The care consultant determines the most appropriate resources for the client and his or her situation. After sending the resources, the care consultant follows up with the client to confirm receipt and to briefly discuss the content to ensure that it is understood.

Care consultants facilitate informed and supported decision making by working with family members and friends to plan for future caregiving, building consensus regarding advance planning and care needs, providing educational resources, and listening to concerns. The average amount of contact is 15 calls over a 12-month period, but the amount of contact is tailored to the needs of the person with dementia and his or her caregiver.

Acknowledgement and Emotional Support for the Person with Dementia

Care consultants involve the person living with dementia whenever possible by engaging their participation in the assessment and assigning action steps. The process works best if the person with dementia has a caregiver involved. BRI Care Consultation™ is a "coaching model driven by consumer choice" (Bass et al., 2015). Care consultants are trained to reinforce client autonomy and self-care; however, a person with dementia may not have the ability to manage daily activities if he or she does not have a caregiver. The geriatrician and care consultant from the Cleveland VA Medical Center stated that a large number of veterans do not have caregivers or any other support.

Care consultation with a person with dementia works best with one action step at a time and frequent check-in calls to assess progress. At times, the person with dementia may not recognize the care consultant's name or understand the reason for the call. The care consultants interviewed said it is best to assume the person does not remember them and to always explain their role and briefly remind them what was previously discussed.

Assistance for the Person with Dementia with Daily Functioning and Activities

Care consultants do not assist the person directly with daily functioning and activities; however, they can provide information on the impact of dementia on the ability to perform daily activities and refer to services to help the person get the assistance that he or she needs.

Involvement, Emotional Support, and Assistance for Family Caregiver(s)

Caregivers are involved in all aspects of the program and work closely with the care consultant to determine areas of concern and specific action steps. The care consultant also works with the caregiver to identify other family members and friends as a way to increase the network of support and decrease caregiver burden. Any interested friend or family member can be named as the person responsible for completing an action step.

During telephone contacts, the care consultant listens to the caregiver's concerns, validates the challenges of the care situation, and helps the caregiver develop a proactive response through the action plan. The care consultant encourages the use of supportive counseling or other services such as respite or ongoing case management. The care consultant can also help the caregiver to identify and mobilize support from other family members and friends through coaching and check-in calls to assess progress made.

Prevention and Mitigation of Behavioral and Psychological Symptoms of Dementia

Care consultants do not assist the person directly with behavioral and psychological symptoms of dementia or train family caregivers on effective approaches for responding to behaviors. However, care consultants provide information on behavioral and psychological symptoms of dementia and train family caregivers on effective strategies for preventing and mitigating behavioral and psychological symptoms.

Safety for the Person with Dementia

Care consultants can respond to a variety of safety concerns such as home safety, elder abuse, falls, or inability to keep up with routine home maintenance. The care consultant can provide educational materials via e-mail or regular mail and follow up to monitor for progress. If it is a situation of suspected elder abuse or self-neglect, the care consultant may involve other providers or Adult Protective Services. The Cleveland VA Medical Center care consultant spoke about some situations where she worked with the primary care physician to evaluate decision making capacity and changes in executive function when a veteran cannot follow through on any action steps.

Therapeutic Environment, Including Modifications to the Physical and Social Environment of the Person with Dementia

Depending on the individual's action steps, care consultants can access information and counsel the person with dementia or family caregiver on a variety of ways to ensure a therapeutic environment. For example, care consultants can help a person with dementia maintain daily routines that feel consistent and familiar. Another example is teaching family and friends about ways to avoid unsafe wandering by providing safe access to the outdoors and offering opportunities for meaningful activity throughout the day to prevent boredom.

Care Transitions

If there is a significant change in the person's medical condition or living situation, a care consultant will conduct additional phone calls to provide coaching and ongoing decision making support to ease transitions across providers and care settings. Numerous studies of BRI Care Consultation™ have found that the program decreases hospital readmissions and emergency department visits (Bass et al., 2003, 2013, 2014, 2015; Clark et al., 2004).

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

The care consultants during the site visit consistently distinguished the BRI Care Consultation™ use of coaching and empowerment of the individual to take action from case management or care coordination with professionals making the arrangements for the client. Care consultants reinforce a client's autonomy and responsibility for their own self-care. Clients are monitored for completion of the action steps with follow-up calls to check on progress made. The BRI model emphasizes the importance of improving problem-solving skills and self-confidence in managing chronic health conditions. A challenge with this model is that persons with dementia will need assistance if they are not able to successfully complete action steps.

Partners in Dementia Care is a version of BRI Care Consultation™ using a formal partnership between a health care organization and a community service organization. This version of BRI Care Consultation™ is designed to facilitate better coordination between medical care and community services, improve access to care, and increase awareness of health care providers about nonmedical needs of people with dementia and family members (Bass et al., 2014). The Cleveland VA Medical Center partnered with the local Alzheimer's Association chapter to find ways to support veterans living with dementia and their caregivers because they found that traditional medical care was not sufficient. Care consultants from the Cleveland VA Medical Center and from the Alzheimer's Association worked as a team to provide support to families enrolled in the program. They sought to provide seamless support through a shared version of the CCIS and access to the U.S. Department of Veterans Affairs (VA) electronic medical record. Alzheimer's Association care consultants went through the process to become VA employees without compensation to allow access to the VA system. This partnership between the local agencies allowed for collaboration with other care consultants on shared clients and problem-solving during weekly team meetings. The care consultants were able to better assist the clients in navigating the VA health care system and access dementia education resources and support through the local Alzheimer's Association.

3.2. Comfort Matters™

3.2.1. Description of Model

Originally called Palliative Care for Advanced Dementia, Comfort Matters™ is a comfort-focused and person-directed approach to care for people with dementia developed through a partnership between the Beatitudes Campus and the Hospice of the Valley in Phoenix, Arizona. Beatitudes Campus is a continuing care retirement community established by the Church of the Beatitudes, a United Church of Christ congregation, which also provides companion care, home health, and medical services. The Comfort Matters™ approach to care extends beyond end-of-life to any stage of dementia and engages the person as an "expert in their own comfort." Comfort Matters™ uses five key concepts (Table 3-4) that are the foundation of interdisciplinary team efforts to meet the medical, physical, social, spiritual, and emotional needs of people with dementia (Alonzo et al., 2015). The program teaches long-term care staff, medical providers, and families about the palliative care approach to dementia care with the goal of improving the person's quality of life by relieving physical pain, behavioral symptoms, and stress.

TABLE 3-4. Key Concepts of Comfort Matters™
Comfort Matters™ uses five key concepts:
  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.
Comfort Matters™ website http://www.comfortmatters.org/about-us/.

Comfort Matters™ trains all staff who have contact with people living with dementia. This includes dietary professionals, housekeeping-laundry-maintenance staff, recreational therapists, social workers, certified nursing assistants, licensed nurses, spiritual care providers, medical care providers, and administrators. In addition, an online training is in development for family caregivers called What Families Need to Know about Comfort Care.

Information for this case study was gathered by reviewing published articles and the Beatitudes website and by conducting an in-person site visit on May 11-12, 2016, in Phoenix, Arizona. As part of the site visit, RTI staff interviewed the Comfort Matters™ program team, Beatitudes executive leadership, direct care staff, nursing management, dining services, and spiritual life enrichment activities staff.

3.2.2. Dementia Care Framework Components

Detection of Possible Dementia

Every new resident of the assisted living facility receives a mini-mental state examination (MMSE) at admission. Residents are reevaluated every quarter and annually for any changes from admission. All staff who regularly interact with the residents are trained to look for visual clues indicating an increase in behavioral symptoms, decrease in mobility, or cognitive changes such as decline in social interaction with others or ability to recognize family members. Staff report observed changes to the nurse in charge or to the medical director who will perform a formal cognitive screen, the Montreal Cognitive Assessment, and conduct a comprehensive diagnostic evaluation.

Diagnosis

The Beatitudes campus has a geriatrician on staff who works with the interdisciplinary team and family when conducting a comprehensive diagnostic evaluation. If there is diagnostic uncertainty or atypical symptomatology, the geriatrician makes a referral to one of the diagnostic clinics affiliated with the Arizona Alzheimer's Consortium. The diagnostic clinics are based in the Phoenix area and in other parts of the state and they include Barrow Neurological Institute, Banner Alzheimer's Institute, Banner Sun Health Research Institute, T-Gen, Dignity Health, Mayo Clinic, Arizona State University, and University of Arizona.

Assessment and Ongoing Reassessment

Whenever possible, staff meet with individuals and family members interested in living on the Beatitudes campus prior to admission to discuss program offerings and living arrangement options. During this time, staff assess the person's care needs and individual preferences, and family members are encouraged to ask questions and provide relevant medical information. Staff conduct pre-admission assessments of individuals from other programs on the Beatitudes campus, hospitals in the Phoenix metropolitan area, and the community. It is not unusual for staff to have several meetings or telephone conversations with families before a person is admitted.

During the admission process, family members are invited to share personal information that will ease the person's transition to a new environment such as the person's life story, daily routine, preferences, and physical, psychological, social, and spiritual history. The initial assessment also includes a MMSE, nursing assessment, detailed medical record review, dietary screening, social work assessment, inventory of activities and interests, medication review, and medical history and physical exam. Staff are engaged in ongoing reassessment over the course of a resident's stay such as daily pain assessment, weekly medication review, and falls monitoring. Direct care staff involved in assisting with daily activities report any changes they observe in a resident that may indicate a decline in physical or cognitive health.

Care Planning

Care planning meetings are conducted within 14 days of a new admission. Interdisciplinary team members work with family members and the person with dementia, as much as possible, to identify treatment goals for the care plan. The team members involved in care planning include the charge nurse, doctor, director of nursing, Minimum Data Set coordinator, pharmacy consultant, social worker, and assistant director of nursing. Family members are invited to participate at a time that is convenient for them. Each resident's care plan is updated quarterly and whenever there is a significant change in medical condition or cognitive status.

Medical Management

The interdisciplinary team includes a licensed geriatrician who oversees medical management. The Comfort Matters™ model incorporates a theory of holistic comfort that consists of three states--relief, ease, and transcendence--and that comfort occurs in different contexts--physical, psychospiritual, social, and environmental (Kolcaba, 1994). This comfort focus permeates every aspect of the person's overall care and medical management.

Pain is often underrecognized and undertreated in long-term care residents with dementia because they cannot easily communicate comfort needs to their care providers. Staff observe for signs of pain in residents daily using the Pain Assessment in Advanced Dementia (PAINAD) scale (Warden et al., 2003). The scale assigns scores to five domains of behavior, and staff can observe residents under different conditions such as at rest, during a pleasant activity, and during care routines. If it appears that a resident is in pain, nursing staff will administer pain medication and then reassess using the PAINAD scale to determine if it was effective. The model also emphasizes medication reconciliation; the advanced dementia residents are on an average of four medications.

Weight loss, a common occurrence in people with advanced dementia, is managed by having residents eat their favorite foods, and food is available at all times of the day and night. Since using this weight management approach, residents have generally gained or maintained their weight without the use of dietary supplements.

Information, Education, and Informed and Supported Decision Making

Comfort Matters™ supports the individual in decision making as much as possible and encourages family caregivers to be advocates for the resident. Staff provide education and information relevant to the situation so that the resident and family members can make an informed decision. An example of their approach is demonstrated by a consultation for a 90-year-old resident with a history of breast cancer who was rejecting her routine mammogram. The director facilitated the family decision making process by asking, "If your mother could see herself now, would she want treatment if she was diagnosed with stage IV breast cancer?" The Beatitudes campus participates in the National Healthcare Decisions Day, an annual event to educate the public about the importance of advance care planning by providing information and resources to residents to put their wishes in writing. By making decisions ahead of time, family members are relieved of the burden of trying to make difficult medical decisions by honoring the resident's stated wishes.

Acknowledgement and Emotional Support for the Person with Dementia

Comfort Matters™ staff are encouraged to provide emotional support through positive interactions and to acknowledge a resident's experience in the present moment. During the site visit, one of the housekeeping staff stopped what he was doing to dance with a resident. He said that he enjoys dancing with her every morning and making her smile. Another staff member said that she talks to residents about their children if they have pictures in their room or sings a favorite spiritual hymn with them. She shared that the interactions she has with residents do not take a lot of time and can really boost their spirits.

Assistance for the Person with Dementia with Daily Functioning and Activities

Comfort Matters™ policies and procedures for the assisted living and nursing home residences on the Beatitudes campus address a variety of areas including activities, bathing, bowel and bladder management, dining, and grooming. Comfort Matters™ staff do not adhere to structured routines but rather daily activities are resident-driven based on preferences and prior routines. For example, there are mealtimes but residents can also eat any time they are hungry. Residents are not required to go to bed or wake at a specific time. If there is a particular personal care activity that a resident does not like, staff are empowered to try doing it differently such as warming up the bathroom before bathing to make it more comfortable or offering coffee while the resident gets dressed in the morning. The program has a wide variety of activities based on resident interest including chair Zumba, yoga, and weekly religious services. Residents from other parts of the campus are invited to join birthday celebrations on the advanced dementia care unit, and the staff encourage interaction with residents from all parts of the Beatitudes campus through campus-wide events.

Involvement, Emotional Support, and Assistance for the Family Caregiver(s)

Comfort Matters™ underscores ongoing communication with family members and building strong partnerships in the care of the resident with dementia as integral to the success of the program. Staff educate family members, provide reassurance, and help them with difficult decisions. The program involves caregivers throughout the course of a resident's stay and provides bereavement counseling after the death of a resident. The Comfort Matters™ staff meet with family members before the person moves to the campus to determine the appropriate level of care and support. After admission, families have the option of staying with the person to ease transition into the program, and family are always welcome to join at mealtime. During the resident's stay, family members are invited to participate in the regular care planning meetings and meet with the team any time there is a change in the resident's cognitive or health status. Caregivers are also invited to participate in various social events carried out on the campus.

Comfort Matters™ encourages family involvement in all aspects of the program throughout a resident's stay. Family are welcome to visit the resident at any time of day and to join at mealtime. Staff are encouraged to take the time necessary to meet with family members and to be available by phone to listen to family member concerns and to provide emotional support.

Prevention and Mitigation of Behavioral and Psychological Symptoms of Dementia

Comfort Matters™ staff are trained that behavior is a form of communication for residents who may have difficulty expressing their needs verbally. Staff know to intervene when observing signs of distress such as pacing, hitting the person next to them, rocking back and forth, or tapping repeatedly. Once staff get to know a resident, they may be able to reduce or prevent behavioral symptoms by anticipating and responding to a resident's needs. For example, a resident with advanced dementia reverted to traumatic experiences she had as a child in Iran and anytime someone approached her, she became anxious and self-protective. Direct care staff assisting her with daily activities learned to say "I will keep you safe" in Farsi, and that would calm her down.

Safety for the Person with Dementia

Residents with advanced dementia are on a third-floor unit, and a rope barrier is used to deter access to the elevator. Hallways and public spaces are kept free of unnecessary clutter that may present a fall risk. Staff eliminate crowding in the activity and dining areas by spreading out the activities in different areas or at different times. At night, the corridors and access to the bathroom are well-lit. The facility is free of physical restraints such as rails on the beds or belts on the wheelchairs. For residents who are at risk of a fall, the program uses lowered beds.

Therapeutic Environment, Including Modifications to the Physical and Social Environment of the Person with Dementia

The program creates a comforting and familiar environment by inviting residents to bring their furniture, pictures, and decorations from home, and family members are welcome to help with decorating the room. An overall slower pace, noise reduction, and quiet spaces help to create a therapeutic environment that minimizes resident agitation by balancing between a tolerable level of social engagement and overstimulation. The program promotes community activities that support a home-like atmosphere among residents, family members, and staff as a way to enhance quality of life and comfort.

Care Transitions

Prior to any new admission from the hospital, Comfort Matters™ staff go to the hospital to ensure that the patient is discharged to the appropriate level of care. Sometimes a returning resident may require a higher level of care such as assisted living or nursing home care after a hospitalization, and staff will work with the medical team to ensure a smooth transition. Comfort Matters™ staff also visit people with dementia in their homes if they are interested in coming to the Beatitudes campus to talk about the different living arrangements on campus and determine the best fit for their needs. The Success Matters team of staff members from different parts of the Beatitudes campus meet weekly to discuss residents showing signs of cognitive decline. The team discusses options for helping these residents to remain in their current living situation and assists residents and family members transition to another program on campus.

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

Comfort Matters™ does not have a specific protocol for referral and coordination of care and services that match the needs of the person with dementia and family caregivers or a specific protocol for collaboration among agencies and providers.

3.3. Healthy Aging Brain Center

3.3.1. Description of Model

Indiana University and Eskenazi Health System, a safety-net integrated health care system in Indianapolis, Indiana, developed the Healthy Aging Brain Center, a dementia and depression care program that aims to reduce dementia-related burden among individuals with dementia and their caregivers. The program operates within Eskenazi Health System and delivers services through clinic and home-based approaches. The program was initiated in 2008 as a clinic-based program, designed to serve individuals with dementia and their caregivers in the clinic. In 2015, the clinic had approximately 1,500 person enrolled in the program. In 2012, with support from a Health Care Innovation Award from Center for Medicare and Medicaid Innovation, the program expanded to serve persons with dementia or depression in their homes (LaMantia et al., 2015). In 2015, the home portion of the program had approximately 703 individuals actively enrolled in the program.

The Healthy Aging Brain Center includes individuals with dementia who are seen both in the clinic and home portion of the program and individuals who are seen only in the clinic or only at home. An interdisciplinary group of staff run the program including physicians, social workers, nurses, neuropsychiatric technicians, and care coordinator assistants. The care coordinator assistants serve individuals enrolled only in the home portion of the program. For the clinic portion, although the majority of referrals come from primary care doctors within the Eskenazi Health System, the clinic does accept self-referral for patients outside the system. The home portion of the program serves only individuals who have a primary care physician within the Eskenazi Health System. The population enrolled in the home portion of the program is concentrated mostly in Marion County. The program has seven care coordinator assistants on staff who each serve between 14 and 21 individuals a day. The home portion of the program ends if the client transfers to another home-based program, is admitted to an institutional long-term care setting, is no longer connected to Eskenazi Health System, or the individual terminates participation.

The Healthy Aging Brain Center uses a tool called the Healthy Aging Brain Care (HABC) monitor to measure the cognitive, functional, behavioral, and psychological symptoms of the person with dementia and his or her caregiver. The HABC monitor has two versions. The self-report version is used to collect information, including quality of life, directly from the patients. The caregiver report version is used to collect information on the patient from his or her caregiver and also about caregiver burden (Monahan et al., 2012, 2014).

Information for this case study was gathered by reviewing published articles and the Healthy Aging Brain Center website and by conducting an in-person site visit on May 23-24, 2016, in Indianapolis, Indiana. As part of the site visit, RTI staff interviewed the team based in the clinic portion of the program, team based in the home portion of the program, care coordinator assistants, physicians, and executive leadership.

3.3.2. Dementia Care Framework Components

Detection of Possible Dementia

Every individual enrolled in the home portion of the program receives a MMSE during their first home visit. Individuals are reevaluated every 6 months for any changes from the initial home visits. The home portion of the program serves people with dementia, depression and mild cognitive impairment. For an individual with no initial diagnosis of memory problem, a lower score on a follow-up visit triggers additional screening and is referred to the clinic. The protocols for the clinic portion of the program include a standardized intake interview with the caregiver, which is conducted over the phone with a social worker and a nurse. The intake interview includes items related to functional and behavioral symptoms and change in social function. Following the intake interview, the first clinic visit is scheduled with the individual/caregiver dyads for a complete diagnostic evaluation. During the first clinic visit, a diagnosis is determined based on a neuropsychological assessment, neurological exams, the intake interview, and laboratory tests. A second clinic visit is scheduled with the individual and the caregiver to provide the diagnosis. This second clinic visit is called the family conference.

Being able to conduct the neuropsychological testing and neurological imaging on site and on the same day of the first clinic visit is important for the individuals with dementia and their caregivers. The biggest challenge is addressing caregivers' denial and conflicting family dynamics that are not helpful to the person with dementia. Another challenge for the clinic portion of the program is a high no show rate, which is a major source of inefficiency for the program.

Diagnosis

Diagnostic tests and full evaluation are conducted in the clinic. In addition, some form of problem identification has already been made for these patients prior to their entry into the program. For a small proportion of clinic patients who are referred from the home-based program, the diagnosis is made in the clinic. These include home-based individuals who joined the program with a diagnosis of depression and mild cognitive impairment, and are referred to the clinic for dementia. The home-based program is not involved in the diagnosis of dementia.

Assessment and Ongoing Reassessment

Individuals with dementia in the program are assessed periodically in a number of domains. For every individual enrolled in the home portion of the program, a care coordinator assistant meets with the individual, caregiver, or both to conduct an initial assessment. This assessment includes MMSE, measurement of the individual's and caregiver's reported cognitive, functional, behavioral, and psychological of the individual using the HABC monitor, Patient Health Questionnaire-9 (PHQ9) depression screening, and recording information on all medications the patient is taking. Care coordinator assistants are engaged in ongoing reassessment during home visits such as a MMSE every 6 months, recording medications on every visit, assessing ADLs and instrumental activities of daily living (IADLs), and assessing home safety.

In the clinic portion of the program, the first assessment is conducted during the intake interview over the phone with the caregiver. The first part of the interview is conducted by social workers, and the second part is conducted by nursing staff. The comprehensive interview includes questions related to the individual's ADLs; cognitive, behavioral, and psychological symptoms' social, family, and medical history; current medications; and caregiver status. During the first clinic visit, the assessment includes measurement of cognitive, functional, behavioral, and psychological status of the individual using the HABC monitor, PHQ9 depression screening, MMSE, and neuropsychological testing. The clinic staff is engaged in ongoing reassessment during clinic visits. The cognitive, functional, behavioral, and psychological status is assessed using the HABC monitor at every clinic visit. The MMSE and depression screening is done every 6 months. Neuropsychological testing is not repeated after the first clinic visit.

The HABC monitors provide important information on the individual's cognitive, functional, behavioral, and psychological symptoms of the individual. Other program successes include bundling the diagnosis and care plan and working with the caregivers.

Care Planning

For the home portion of the program, care planning meetings are conducted following the home visits. The care coordinator assistants bring back the information they had discussed with the individual or their caregiver in their homes to discuss with care coordinators. The care coordinator can be a registered nurse (RN) or a social worker. The care planning meetings include discussions about referrals to the clinic portion of the program, referrals to the primary care doctor, and connecting the individual with community resources. Once the staff have devised the care plan, they conduct home visits to review the care plan with the individual and caregiver and deliver relevant information--nurses give information on medications, social workers provide details on community resources and insurance-related issues, and in some cases, care coordinator assistants provide other information to patients. Each individual's care plan is updated after every home visit or whenever there is a medical event. For example, if a patient is hospitalized or has an emergency room visit, an effort is made to understand the cause of the event, and a new care plan is developed to prevent future events. Nurses visit individuals in their homes following hospitalization or an emergency room visit, sometimes jointly with care coordination assistants.

For the clinic portion of the program, care planning starts with the family conference. The care plan is personalized based on the intake interview and first clinic visit. The entire team, which includes the doctor, nurse, social worker, medical assistant, and neuropsychological tester, meet to discuss the diagnosis prior to the family conference. Professional staff included in the family conference are the doctor and the nurse or social worker. The program strongly encourages at least one family member to accompany the patient for the family conference. One of the main goals of the family conference is to educate family about the patient's dementia and help caregivers understand more about the disease, including how the disease likely will progress, and to identify treatment goals. The family conference has been helpful for the caregivers to understand that the program is designed to focus on both the individual with dementia and his or her caregiver. A major difficulty is that a substantial number of participants fail to show up for their clinic appointments. Some of the other challenges for care planning include: (1) family dynamics because the program is limited in its role to advise or educate family members; (2) absence of a family member who is competent to take on the role of caregiver; and (3) handling the expectation that the program will "fix everything" and to have quick solutions to the problems.

Medical Management

The medical management for both the clinic and home-based portion of the program usually defaults to the individual's primary care physician, who is usually within the Eskenazi Health System. An exception to this protocol is when an individual comes to the clinic with an issue that needs urgent attention. In this situation, the clinic contacts the primary care physician and makes care recommendations. Because a majority of individuals with dementia in the program use the Eskenazi Health System, their information is already in an electronic medical record. Program nurses conduct medication reconciliation for all individuals enrolled in the program. A majority of individuals have comorbidities, so it is important to make sure that they are taking their medications correctly. To keep the primary care physicians informed of their patients' visits through the clinic, the program's protocol involves transferring the dictation from the clinic visits to the primary care physician. As a part of medical management, the program also educates the caregivers about new diagnoses and the plan of care for when they see other doctors.

The biggest challenge for the program is to manage individuals with dementia who have physicians outside the Eskenazi Health System or those who move into a long-term care facility. Also seen as a challenge is that individuals and caregivers are involved with many physicians, not just their primary care physician. Another challenge for the program is communication with health care providers outside their program. Conflict also can arise with the individual and their prescriber about taking certain medications if the clinic recommends to stop some medications.

Information, Education, and Informed and Supported Decision Making

The Healthy Aging Brain Center supports the individual in decision making as much as possible and encourages family caregivers to be an advocate for the individual. The program has a wide array of educational resources on topics such as understanding dementia behaviors, disease management strategies, behavioral techniques to help manage behavioral symptoms, coping strategies for caregivers to maintain their physical and emotional health, and community resources for dementia care. In the home portion of the program, the care coordinator assistants provide education and information relevant to the particular situation so that the individual and caregivers can make informed decisions. The care coordinators and care coordinator assistants receive a 9-month training with a palliative care team on how to develop advance directives, which was part of a HHS Centers for Medicare & Medicaid Services (CMS) Innovation Grant. Being in the individual's home environment where they are comfortable makes it easier for care coordinator assistants to initiate conversations about end-of-life care.

For the clinic portion of the program, the education material relevant to the needs of the individual and the caregiver is provided as a guidebook during the family conference. The clinic staff continue to provide information and support during follow-up clinic visits and by telephone consultation. The crisis plan and preparing for end-of-life care are discussed in the follow-up clinic visits. A challenge of providing information on advance directives is serving patients and caregivers who are non-English speaking because most of the education material is in English.

Acknowledgement and Emotional Support for the Person with Dementia

For the home portion of the program, it is mostly the care coordinator assistants who are involved in providing emotional support to the patient with dementia through positive interactions and showing that they care and by acknowledging the individual's experience in the present moment. Within the clinic, the social workers do supportive counselling. The Healthy Aging Brain Center encourages the patients to reach out to the resources within the Eskenazi Health System or within the community for emotional support. Success for the home portion of the program lies in having care coordinator assistants who are good listeners, empathetic, and able to validate feelings of the patients. The program has been successful in getting patients connected to resources that help them have a good quality of life.

Assistance for the Person with Dementia with Daily Functioning and Activities

The home portion of the program includes screening for ADLs. The care coordinator assistants help patients connect to community services and home resources that can provide assistance. The program has been successful in developing relationships with organizations such as Indiana Council of Aging, which has helped in getting patients connected to appropriate services. Involvement of social service organizations has helped reduce some of the stress experienced by care coordinator assistants. It is challenging for the program when they have younger patients because a majority of needed services are designed for the population over age 60. The clinic portion of the program is not involved in providing assistance with daily functioning and activities, but the clinic will refer patients to appropriate services and resources.

Involvement, Emotional Support, and Assistance for Family Caregiver(s)

The HABC is dedicated to including caregivers throughout the care process. Caregivers are encouraged to accompany the individuals during the clinic visits and home visits. The program uses multiple modes of communication to stay in constant contact with caregivers, including text, e-mail, and phone. The program encourages caregivers to participate in monthly support groups and to use services through local Alzheimer's Association chapters. The clinic portion of the program encourages caregivers to take weekly retreats, which include 8 hours of respite for the caregiver. To arrange caregiver retreats, the program staff work with local resources, such as adult day care or bringing the aide at home. It is at times challenging for the program to involve caregivers because of family dynamics. The clinic is designed on the premise that the family caregiver is the key provider, but it may require negotiation with the caregivers to find common ground to accomplish the care plan. The biggest challenge has been in addressing caregivers' denial and conflicting family dynamics that are not helpful to the patient.

Prevention and Mitigation of Behavioral and Psychological Symptoms of Dementia

For the home portion of the program the care coordinator assistants measure cognitive, functional, behavioral, and psychological status of the individual using the self-report and caregiver version of the HABC monitor. The HABC monitors are conducted at every home visit. Based on the responses from the HABC monitor, the care coordinator assistants provide necessary resources and procedures. The information from monitors is transferred to the individual's electronic medical record, which helps in monitoring the results over time. The program staff refer to nonpharmacological interventions to treat the behavioral and psychological symptoms of dementia identified using the HABC monitor. One of these nonpharmacological treatments is cognitive behavioral therapy provided by a team of psychiatrics from Eskenazi Health System who see patients once a week in the clinic portion of the program. The program avoids use of antipsychotic medications for as long as possible. If used, then it is only for a short time and when nonpharmacological therapies have not worked. One challenge has been educating family members about why the program does not advocate using medications for individuals with dementia.

Safety for the Person with Dementia

For the home portion of the program, a home safety evaluation is done on the initial assessment. The care coordinator assistants address safety conversations during the home visits and take note of the condition of the house, such as broken steps, no running water, hoarding, and other safety concerns. The care coordinator assistants refer to community resources to help the patients with safety issues. When safety is an issue, the program may suggest transition to another living arrangement such as an assisted living facility. The program has been successful in helping patients get connected to appropriate community resources. A challenge, in some cases, has been getting the individual and caregiver to listen to the care coordinator assistants' suggestions for modifications. The clinic portion of the program is not involved in providing assistance with safety for the individual with dementia.

Therapeutic Environment, Including Modifications to the Physical and Social Environment of the Person with Dementia

In the home portion of the program, the issues related to the physical and social environment are identified using the HABC monitor. The care coordinator assistants refer to community resources to help individuals with modifications. A challenge, in some cases, has been getting the patient and caregiver to listen to the care coordinator assistant's suggestions for modifications. The clinic portion of the program does not have a specific protocol related to the physical and social environment of the person with dementia.

Care Transitions

For the home portion of the program, protocols require that a nurse go to the individual's home within 72 hours of hospitalization and within a week of emergency room discharge to reconcile medications and to coordinate a post-discharge care plan. If an individual with dementia moves to a long-term care facility, the program staff can provide coaching and education to the caregiver and share information about the individual with the nursing staff of the assisted living facilities.

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

The program is dedicated to building relationship with agencies and providers serving the patient population. However, the program does not have specific protocols for referrals, coordination of care, or collaboration among agencies and providers. The program provides options to patients for home health agencies, nursing homes, adult day care, and hospice.

3.4. MIND at Home

3.4.1. Description of Model

MIND at Home is two closely related studies funded by the NIA and CMS. The CMS study is similar to the NIA research project, but includes the provision of the Tailored Activity Program (TAP), when appropriate, and is targeted largely on people dually eligible for Medicare and Medicaid. The program, operated by Johns Hopkins University in Baltimore, Maryland, provides intensive care management and care coordination to people with dementia and their caregivers, with most of the interaction taking place with the caregiver. Reducing transitions to hospitals, nursing homes, and assisted living facilities is an important goal of the project and the studies. The full intervention lasts for 18 months. In May 2016, about 400 persons participated in the program.

The intervention is primarily provided by noncredentialed memory care coordinators, but there is substantial RN involvement, and a geropsychiatrist plays a prominent medical role and is available for consultations. The manualized care coordination protocol consist of four key components: identification of needs and individualized care planning based on the Johns Hopkins Dementia Care Needs Assessment to address unmet needs and to match the priorities and preferences of the patient and family; provision of dementia education and skill-building strategies; coordination, referral, and linkage to services; and care monitoring. Care components are individually tailored to current unmet needs and updated based on emergent needs of participants and caregivers.

Following a detailed assessment by a nurse and a care coordinator, a care plan is developed with the caregiver and the person with dementia. A key component of the program is the use of a computerized resource system that is able to identify resources and recommendations for identified problems. Following the establishment of the care plan, care coordinators work with the caregiver and person with dementia to implement the plan, with most contact being by telephone, mail, and e-mail. In-person meetings can occur at any time, but are built into the protocol at 9 and 18 months.

3.4.2. Dementia Care Framework Components

Detection of Possible Dementia

The program does screening of program applicants to ensure that they meet the cognitive impairment required by the program, that they are live in the catchment area for the project, and that they are looking for the types of services that the project offers. In most cases, it is the caregiver who contacts the program, usually by telephone. Screening of the person with dementia is conducted by telephone by student research assistants using a simple cognitive screening instrument. Once the person with dementia passes the screen and other criteria are met, they will be scheduled for an in-person visit for a full assessment. As of May 13, 2016, of the 1,053 people who have been screened, about half meet the criteria and indicated an interest in participating in the program/study. The most common reason for not participating was "declined/not interested," which partly reflected lack of interest in participating in a study.

Diagnosis

A formal diagnosis of dementia is not required to participate in the program. At the initial home visit, the physician or nurse will administer the MMSE and other cognitive assessment tests to assess whether the person has dementia. The clinical team will refer the participant to their primary care physician for a more thorough workup or to the Johns Hopkins University memory clinic if there is an unusual presentation of the disease, or if there is a question about the diagnosis. Reportedly, there is a 4-month wait for an appointment at the Johns Hopkins University memory clinic.

Assessment and Ongoing Reassessment

A comprehensive initial assessment of the person with dementia and their caregiver, usually conducted by a nurse and a memory care coordinator, is a key component of MIND at Home program. The initial assessment is completed at the home of the person with dementia and typically takes 2.0-2.5 hours, including signing various study consent forms. The assessment gathers information on sociodemographics, home safety, cognitive status (using the MMSE), the health of the person with dementia and the caregiver, legal concerns, functional status, meaningful activities in their daily routine, caregiver stress, neuropsychiatric status, planning for the dyad, any support they are currently receiving, etc. A physical exam is conducted by the nurse or other medical clinician. There are three categories of needs: unmet, partially met, and met. A walkthrough the inside and outside of the house is conducted to determine if there are safety issues. Medications are reviewed for both the person with dementia and the caregiver. Challenges in conducting the assessment include "getting in the door and establishing rapport," bed bugs, presence of firearms, having no place to sit, the presence of pets, allergies, and suspicions of the motives of researchers. The assessment is entered into a computerized form on a laptop. Areas that the caregiver or the assessment team believe should be addressed are checked off on the assessment form. Another full assessment is conducted at 9 months and at the conclusion of the intervention at 18 months.

Care Planning

After the initial assessment, the nurse and memory care coordinator will discuss the person with dementia and caregiver, identify areas that they believe, given the views of the dyad, that need to be addressed, and develop recommendations. In developing their recommendations, they rely heavily on a web-based care management database that contains an actions log and a library of available resources for each need. MIND at Home has extracted the relevant resources to the dementia population and included those in the database. Sources include the Maryland Aging and Disability Resource Center, the Alzheimer's Association, and legal aid. The available resources include toolkits, tips sheets, and other reading materials addressing the identified problem areas. Common areas identified for action include legal documents, medications, and general health care management, fall risk and home safety, caregiver support, medical workup for a formal diagnosis, assessment of driving capacity, help with the ADLs, and activities to prevent social isolation, such as adult day care. If the team feels the participants need formal services, they will refer them to a provider.

After the care plan is developed, a detailed letter with the recommendations of the care team is sent to the caregiver. There is a fairly general letter template but the team can customize it so that it is personalized and has more specific recommendations. With permission of the person with dementia or their caregiver, a copy of the letter is sent to the primary care physician; the participant is encouraged to review the letter with his or her doctors. Approximately 2 weeks after the initial visit, the care coordinator will visit again to review and discuss the care plan. At that time, the care plan will be revised to meet the priorities, interests, and abilities of the personal with dementia and caregiver. At this point, the participants decide on tasks to complete and timelines are established for accomplishing those activities.

Following the initial care planning meeting, follow-up frequency is based on the needs of the person with dementia and the caregiver. Minimum contact is once a month via telephone call or e-mail. If the participant cannot be reached, the care coordinator may send a resource and then follow up. For care coordination purposes, in-person visits average about every 4.5 months. This is not a formal or structured visit but rather guided by the need and circumstances of each case. The goal is to teach the participants and empower them to seek out the available resources and help from other family members and the community. At the end of the intervention at 18 months, another comprehensive set of recommendations are provided.

Medical Management

Medical management is an important component of the project, with RNs and a geriatric psychiatrist playing important clinic roles, but the project does not provide medical care. One of the main outcomes being tracked is hospitalization rates and transfer to nursing homes. The clinical team and care coordinators teach caregivers to monitor symptoms and behavior changes and to make adjustments to the home environment to avoid falls. The care coordinators try to make sure the person with dementia is getting preventive and general medical care.

The clinical team and care coordinators focus on a variety of issues including:

  • Teaching caregivers to recognize infections and urinary tract infections.

  • Checking blood pressure, monitoring any swelling of the feet, and watching for pressure sores.

  • Ensuring hydration (reportedly, many people with disabilities live in two-story houses with the bathroom on the second floor, leading some people to reduce their liquid intake so that they do not have to negotiate the stairs to use the bathroom).

  • Reviewing medications and ensuring appropriate medication adherence.

  • Reducing falls by managing the home environment.

  • Ensuring that persons with dementia is seen by their primary care physician after hospital discharge.

  • Identifying needs for specialty care.

Establishing a connection with the primary care physician is thought to be essential, but is difficult, in part because of time constraints on the part of the doctor. Care coordinators will contact the study physician from the field if there is an urgent issue, such as if the participant or caregiver appears to be suicidal.

The program is exploring telemedicine to increase its clinical reach. This innovation would involve using an iPad with a secure connection to enable the care coordinator in the field to connect with the program physician. Technically, it would be a consultation to the care coordinator and not a medical consultation to the caregiver or person with dementia, but it would provide "another set of eyes" on the person with dementia or his or her caregiver.

Information, Education, and Informed and Supported Decision Making

The program provides educational materials and coaching to the person with dementia and the caregiver. Much of the education takes place by phone, although care coordinators do make some in-person visits. As noted above, the program maintains a database of educational materials, which includes a wide range of resources organized by topics, which the care coordinators can use. The resources include relevant resources from the Alzheimer's Association and other organizations, books, and websites. The care coordinators work with the caregivers and do not just "dump" the material and leave it to the caregivers to learn what to do. The purpose of the information is to help the person with dementia and caregivers to make informed decisions regarding needed care.

Assistance for the Person with Dementia with Daily Functioning and Activities

The assessment identifies people who need help with daily functioning, but the program does not directly provide help with the ADLs, such as eating, bathing, and dressing, or the IADLs, such as help with housekeeping or meal preparation. Memory care coordinators will help connect participants with programs that provide these services. Although Maryland does have a Medicaid home and community-based services waiver that provides these services, the waiting list is reported to be more than a year long and is limited to people who need a nursing home level of care and who meet the financial requirements.

Acknowledgement and Emotional Support for the Person with Dementia

Memory care coordinators involve the person with dementia when possible, but the interactions are primarily by phone with the caregivers.

Involvement, Emotional Support, and Assistance for Family Caregiver(s)

The program works with caregivers to provide them with emotional support. Care coordinators often find that just giving caregivers the opportunity to talk with another person about their problems is helpful. Contact is largely by telephone or e-mail and is part of the process of building trust and relationships with the participants. Care coordinators talk by phone with caregivers at least once a month but the level of contact depends on the needs of the caregiver. If participants are working on important recommendations or addressing a complicated issue, care coordinators and caregivers will talk more often, and it sometimes helps to have another in-person visit.

Prevention and Mitigation of Behavioral and Psychological Symptoms of Dementia

The team addresses behavioral symptoms by conducting an assessment of the problem behavior, how often it occurs, and determining what triggers the behavior. They begin by first trying to rule out any medical problems that may be causing behavior change. Most behavior can be managed by caregivers who are provided appropriate training. Care coordinators offer coaching and modeling for the problematic behaviors. Care coordinators provide skills training and use available protocols and resources depending on what the problem is. The strategy is to listen to the caregivers as most have no one to talk to and to send written materials, which the caregivers can read when they have time and then follow up with them during the next contact. In addition, for the CMS-funded participants, the TAP, a home-based occupational therapy intervention shown to reduce behavioral symptoms and caregiver burden, is offered (Gitlin et al., 2009).

Safety for the Person with Dementia

The home environment is a major focus of the program because falls are a major cause of hospitalization and transitions to assisted living and nursing homes. During the home assessment, the RNs and care coordinators note if there are safety issues, such as throw rugs or tables on wheels and inadequate lighting. If these hazards exist, the care coordinators will discuss eliminating them with the caregivers.

The program also addresses a variety of other safety issues, including wandering, driving, and kitchen safety. They often recommend medical alert systems and medical identification bracelets for both the caregiver and the person with dementia. In some cases, the presence of guns in the home is a safety issue.

Therapeutic Environment, Including Modifications to the Physical and Social Environment of the Person with Dementia

MIND at Home works with caregivers to make the home setting pleasant to the person with dementia, but as a home-based program, it is not a major focus.

Care Transitions

A major goal of MIND at Home is to reduce transitions to hospitals, nursing homes, and assisted living facilities. In their view, the main controllable factors related to hospitalizations are problems with home safety, including falls, inadequate medication adherence and poor prescribing on the part of physicians, and missing medical appointments (which occurs for a variety of reasons). The program attempts to address all of these by working with the caregivers.

When hospitalization does occur, the program strongly encourages caregivers to notify the program when the person will be coming home. Care coordinators stress to the caregivers the importance of receiving and understanding the discharge orders. Program staff try to make an in-person visit soon after the person with dementia has been discharged from the hospital.

When a transition is needed to a long-term care facility, the entire team helps with the placement process. Once the participant transitions to a long-term care facility, he or she can no longer participate in the program.

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

Since MIND at Home does not provide any direct services, it does not explicitly collaborate with other agencies and providers in supplying the care that participants with dementia and their caregivers need. The exceptions are the Jewish Family Services Agency in which the care coordinators are embedded and Johns Hopkins University Home Care where the nurses are embedded; supervisors from those agencies come to the MIND at Home clinical meetings.

MIND at Home refers caregivers to organizations that may be able to provide them with the services they need. Because the program is time-limited (18 months), they attempt to teach caregivers how to locate the services they need on their own. MIND at Home refers to the VA, the Alzheimer's Association, Action in Maturity, Senior Legal Services, Medicaid, Area Agencies on Aging, and several adult day centers. The program developed a Health Provider Directory, which includes all the doctors that participants are seeing or have seen. Similarly, it has built a directory that includes a large number of services, providers, and agencies in the Baltimore area.

3.5. RCI REACH

3.5.1. Description of Model

Rosalynn Carter Institute for Caregiving's (RCI's) Resources for Enhancing Alzheimer's Caregiver Health (REACH) focuses on the overall well-being of family caregivers of people with dementia. RCI is located in Georgia, but the Institute supports REACH programs throughout the United States. REACH began in 1995 as behavioral research based on a number of multicomponent interventions that were designed to enhance family caregiving for Alzheimer's disease and related disorders. The interventions were based on various theories consistent with basic health-stress models, which are designed to recognize or change the stressor or adapt the caregivers' response to the stressor. Results of this first study emphasized the need for further research. REACH II was studied through a randomized control trial and implemented with caregivers of people with dementia. The multicomponent intervention assesses and addresses issues identified by caregivers. Findings of the randomized control trial indicated that caregivers demonstrated improvement in caregiver burden, depression, and management of difficult behaviors, social support and self-care, which created a better environment for care for the care recipient (Easom et al., 2013). The RCI REACH program is based on REACH II.

Caregiver coaches serve as interventionists for the RCI REACH program and meet with caregivers in individualized sessions to provide them with information and techniques to manage their caregiving activities. Caregiver coaches ideally have some formal education in addition to experience in providing social services or hands-on personal experience with dementia. An essential part of the RCI REACH intervention is the Dealing with Dementia: A Caregiver's Guide provided to caregivers. The Guide is in the format of a more than 300-page book directed at caregivers and how to work through the various stages of dementia. The Dealing with Dementia guide includes resources related to various caregiving topics and is used during sessions and as a reference for caregivers during and after the intervention.

RCI REACH lasts 6 months and consists of 12 individual coaching sessions with the option of three additional sessions, if needed. Of the 12 sessions, up to nine are delivered face to face and up to three are delivered by telephone. At the initial meeting with caregivers, the caregiver coaches collect demographic data and conduct a risk appraisal assessment related to caregiver depression, burden, health, social support, self-efficacy and desire to institutionalize, and any behavioral issues of the person with dementia (Easom et al., 2013). The results of the risk assessment guide the remainder of the intervention sessions with each session focused on assisting the caregiver with an issue identified in the risk assessment. For example, if the risk assessment found that a caregiver was feeling a great deal of stress, the caregiver coach would teach the caregiver stress management and coping skills.

RCI has been working with REACH since 2008 by translating the intervention initially from a clinical trial to replicating and implementing the REACH protocol in various communities. RCI's Training Center for Excellence has provided training on how to administer RCI REACH to more than 20 agencies across the United States. Technical assistance is also offered to agencies implementing RCI REACH through the Training Center for Excellence.

Information for this case study was gathered by reviewing published articles and the RCI website and by conducting phone interviews with staff involved in RCI REACH. In June 2016, RTI staff interviewed key RCI staff who administer the RCI REACH program and staff who work in the RCI REACH program through the Coastal Georgia Regional Commission Area Agency on Aging.

3.5.2. Dementia Care Framework Components

Detection of Possible Dementia

RCI REACH uses the Functional Assessment Staging of Alzheimer's Disease (FAST©) Scale to determine a person's stage of dementia. This is the same screening tool that is used to determine if Medicare beneficiaries with dementia are eligible for hospice care. It has been beneficial to RCI REACH to use this tool so they can coach caregivers to consider hospice if the person with dementia is eligible and the service is needed. At times, it has been challenging to use the FAST© tool if caregivers do not want to meet in their homes and choose to meet at a public location such as a coffee shop or library. In these instances, the caregiver coaches must solely rely on responses provided by the caregiver to the items included in the FAST© tool.

Diagnosis

Although RCI REACH does not directly get involved in the diagnosis of dementia, caregiver coaches encourage caregivers to obtain a formal diagnosis from their primary care physician or neurologist for their care recipient if they do not have one.

Assessment and Ongoing Reassessment

A thorough assessment of persons with dementia is not conducted through RCI REACH. However, the caregiver coach completes an assessment of caregiver risks through a Risk Priority Inventory, which assesses caregiver depression, burden, health, social support, self-efficacy, desire to institutionalize, and behavioral problems (Easom et al., 2013). It also includes a walkthrough of the home environment to assess safety in the home.

Care Planning

Because RCI REACH primarily focuses on the family caregiver, there is no formal care planning process for the person with dementia's care goals and needs. Rather, RCI REACH is designed around five main issues, which are addressed by the coach: safety, caregiver health, problem-solving, caregiver well-being, and social support. As issues arise with any of these components, individualized solutions are developed to assist the caregiver. The coach and caregiver work together to develop strategies to solve the issues, but the caregiver is encouraged to take specific actions on his or her own. This method helps build caregiver confidence.

To address everyday care needs, the caregiver coach will work to identify needed community resources. The coach also will encourage caregivers to develop a daily routine and will assist in finding appropriate activities based on the person with dementia's abilities. The schedule is informal, however, allowing the caregiver to determine when each activity occurs.

Medical Management

RCI REACH does not address medical management issues. However, if medical management is identified as a challenge for caregivers during the Risk Priority Inventory or otherwise during the course of the intervention, the caregiver coach will work with the caregiver to get necessary resources and support. There is also a section on medical management in the Dealing with Dementia guide that caregivers can refer to as needed.

Information, Education, and Informed and Supported Decision Making

Caregiver coaches provide information and education to caregivers on an ongoing basis throughout the intervention through the Dealing with Dementia guide, videos, webinars, and handouts. All caregivers receive the Dealing with Dementia guide, and during the second visit, all coaches provide a standard explanation on how to use the guide. The guide includes information on many topics related to caregiving for a person with dementia, such as dementia education, care planning, and end-of-life decisions. The caregiver coach provides information on the disease process that is necessary for caregivers to make informed decisions. This includes explaining that dementia is a terminal disease because many caregivers do not fully understand that aspect of the disease process. Caregiver coaches consistently work to help caregivers understand how dementia affects a person's brain and explain that behaviors they observe are the result of the disease. Materials provided to caregivers are tailored to meet their individual needs.

Acknowledgement and Emotional Support for the Person with Dementia

RCI REACH does not directly provide acknowledgement and emotional support for the person with dementia. However, the program indirectly addresses these issues by providing assistance to caregivers, such as helping them reduce stress and manage difficult behaviors and encouraging them to find enjoyable activities for both themselves and the person with dementia. The caregiver coach can also refer the caregiver to the local Area Agency on Aging or other organization to provide support for the care recipient.

Assistance for the Person with Dementia with Daily Functioning and Activities

If the person with dementia's daily functioning and activities is one of the target areas identified by caregivers in the risk appraisal, the caregiver coach will work with the caregiver to determine strategies to address these issues. Strategies may come from the Dealing with Dementia guide, which includes a chapter on finding activities suitable for the care recipient. Caregiver coaches can refer caregivers to the local Aging and Disability Resource Center or other organizations for assistance. Some caregivers find it difficult to follow through with activities agreed upon with the caregiver coach. In those cases the caregiver coach will work with the caregiver to modify the activities or find coping strategies to assist the caregiver.

Involvement, Emotional Support, and Assistance for Family Caregiver(s)

Inclusion of caregivers is the foundation of RCI REACH, and the provision of emotional support for the caregiver is emphasized throughout the program. The process of the caregiver working with the coach to identify areas of concern and developing solutions empowers caregivers. As noted above, in addition to sessions being focused on caregivers, Dealing with Dementia: A Caregiver's Guide is provided to all RCI REACH caregiver participants. Because caregivers can be overwhelmed by their role or unable to focus on the coaching process, it can be challenging to complete the full intervention protocol and, at times, caregiver coaches have difficulties building rapport with the caregiver participants. Despite these challenges, RCI REACH has been shown to reduce caregiver depression and burden, and improve caregiver self-efficacy and self-reported health (Easom et al., 2013).

In addition, the caregiver coaches focus on encouraging and praising the actions of caregivers and providing them the support necessary to maintain emotional stability. Although it can be a challenge, the caregiver coach works with caregivers on strategies for dealing with their personal feelings. The caregiver coach also encourages caregivers to attend support groups, teaches problem-solving skills, provides necessary resources, and ensures that caregivers take care of themselves.

Prevention and Mitigation of Behavioral and Psychological Symptoms of Dementia

Caregivers are trained on a nine-step problem-solving process to assist them in addressing behavioral and psychological symptoms of dementia. If the caregiver coach believes medications may be contributing to behavioral or psychological symptoms, he or she will encourage the caregiver to consult with the care recipient's physician about the issues.

Safety for the Person with Dementia

The initial Risk Priority Inventory includes a home safety assessment. The assessment examines issues such as wandering, presence of firearms in the home, and suicide. If safety risks are identified, the caregiver coach provides caregivers with strategies to manage the safety risks. In some cases, caregiver coaches need to convince caregivers to be proactive to avoid a major crisis.

Therapeutic Environment, Including Modifications to the Physical and Social Environment of the Person with Dementia

The caregiver coach will work with the caregiver to address environmental issues if they arise. Strategies such as using labels around the home, handrails and grab bars, and locks on the doors and windows are suggested if needed. Caregiver coaches share ideas and help each other during bimonthly staff meetings.

Care Transitions

RCI REACH does not explicitly address care transitions, but information on care transitions is included in the Dealing with Dementia guide for caregivers to refer to.

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

RCI REACH does not have a formal referral and coordination of care protocol. However, caregiver coaches, through their experience and knowledge of the local aging network, can provide caregivers with information for needed resources and services. For example, one RCI REACH program is managed through an Area Agency on Aging. All caregivers in the program are screened by the Area Agency on Aging staff who place them on waitlists for services or make referrals to other resources as needed. RCI REACH does not explicitly collaborate with other agencies and providers.

3.6. Case Studies References

  1. 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.

  2. 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.

  3. Bass, D., Easom, L., Primetica, B., & Holloway, C. (2015). Reflections on implementing the evidence-based BRI Care Consultation with RCI in Georgia. Generations, 39(4), 49-56.

  4. 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.

  5. 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.

  6. 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.

  7. 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 and Mental Health, 8(1), 40-51.

  8. 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.

  9. Gitlin, L.N., Winter, L., Earland, T.V., Herge, E.A., Chernett, N.L., Piersol, C.V., & Burke, J P. (2009). The Tailored Activity Program to reduce behavioral symptoms in individuals with dementia: Feasibility, acceptability, and replication potential. Gerontologist, 49(3), 428-39. doi: 10.1093/geront/gnp087.

  10. Kolcaba, K. Y. (1994). A theory of holistic comfort for nursing. Journal of Advanced Nursing, 19(6), 1178-1184.

  11. 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(6), 1209-1213.

  12. Monahan, P.O., Alder, C.A., Khan, B.A., Stump, T., & Boustani, M.A. (2014). The Healthy Aging Brain Care (HABC) Monitor: Validation of the Patient Self-Report Version of the clinical tool designed to measure and monitor cognitive, functional, and psychological health. Clinical Interventions in Aging, 9, 2123-2132.

  13. 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.

  14. Warden, V., Hurley, A.C., & Volicer, L. (2003). Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. Journal of the American Medical Directors Association, 4(1), 9-15.