A growing number of programs to help persons with dementia and their family caregivers are being developed, tested, and implemented in the United States. To learn more about whether and how a sample of these programs are meeting practice standards, the Examining Models of Dementia Care project team identified 14 components of dementia care and conducted site visits to assess implementation of the components by selected programs.
The dementia care components were identified through a detailed analysis of 37 existing clinical guidelines and practice recommendation documents. Some of these guidelines and practice recommendation documents were developed by and focus on dementia care practices of specific professional groups (e.g., neurologists, psychologists, occupational therapists). Other guidelines and practice recommendation documents focus on dementia care in particular settings (e.g., home care, residential care, primary care). Still other guidelines and practice recommendation documents focus on dementia care for persons in various stages of the condition, most frequently late-stage dementia.
The 14 identified components differ from most of the clinical guidelines and practice recommendation documents in that they encompass aspects of care for people in all stages of dementia and their families, in multiple care settings, from home to nursing home and medical care settings, and provided by a wide array of medical, social, and allied health care professionals, paraprofessionals, and direct care workers. The project postulated that most of the activities required to address the components could be performed by various types of trained professional, paraprofessional, and direct care workers. An exception to this assumption is medical management activities that can only be performed by a physician or other medical care provider who is authorized to perform them under state law and regulations for particular public programs and settings (e.g., prescribing medications.
Five dementia care programs were selected for site visits from more than 50 possible programs. With only five programs, it is not possible to represent the full array of existing programs to help persons with dementia and their family caregivers. Nevertheless, the five programs were chosen to represent various program settings and ways of implementing the 14 identified dementia care components.
One of the five programs was based in a medical clinic, one program was based in a residential care setting, and three programs were based in community agencies. The five programs 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
- RCI REACH, in Americus, Georgia.
In-person site visits were conducted for four of the programs and telephone interviews were conducted for one program because of the travel distances involved. The purpose of the site visits was to examine how the programs were addressing each of the care components. Structured discussion guides were prepared for each site visit. As a result of the site visit experience, project team members also learned about perspectives of program administrators and other staff at the program sites about real-world implementation of their programs.
Despite the small sample of dementia care programs examined, the site visits resulted in useful findings about whether and how the programs were addressing the 14 components. This included noting similarities and differences in how they were interacting with persons with dementia and family caregivers, and perceptions and observations of program administrators and other staff, some of which cannot be found in the published literature.
Findings from the site visits include the following:
None of the five programs had procedures in place to detect possible dementia in general populations.
The five programs were all working with persons whose possible dementia had been detected by someone before they and their family caregivers entered the program. None of the programs were attempting to identify people with possible dementia in general populations, such as all patients of a particular physician or physician practice or all enrollees in a particular health plan. Individuals with dementia and family caregivers were usually referred to the programs by health care or social service professionals or other service providers who had detected signs and symptoms of possible dementia, although some were self-referred or referred by a family member who was aware of their possible dementia.
Some program administrators and staff responded to questions about the detection of possible dementia by noting brief mental status tests they use to decide whether a person with possible dementia who has been referred to the program meets its entry requirements or to determine stage of dementia. These tests result in valuable information for the program. The programs do not, however, use the tests or any other methods of detection in general populations to identify persons with possible dementia who could benefit from the programs.
None of the five programs directly addressed all 14 components, but most of the programs addressed most of the components. Program administrators indicated that some of the components are out of the scope of their program.
As expected, none of the five programs addressed all the components. Nevertheless, most of the programs addressed most of the components. Some components, including assessment, care planning, and safety for the person with dementia, were addressed by all five programs, although the programs differed in the ways they addressed these and each of the other components.
During the site visits, the program administrators and staff acknowledged the importance of all the components. When asked whether they address each of the components in their program, however, they generally responded that some components were outside the scope of the program or were not a major focus. When asked explicitly about barriers they face in addressing the components, they talked most often about challenges they encounter in implementing the components already included in their programs.
These responses suggest that inclusion or exclusion of particular components is probably intentional, reflecting not only limitations due to staffing and resources but also commitment to a specific model or set of components they believe will reduce the problems in dementia care that concern them most. Some of the problems the program administrators and staff talked about trying to solve with their programs include the pervasive lack of assistance for the specific needs of people with dementia, the lack of individualized information, education, and skills training that can increase family caregivers' self-confidence and effectiveness in their caregiving role, and the lack of high-quality, comfort-focused care for persons with advanced dementia.
The five programs used at least three ways to address the components: direct provision of the needed assistance; referral to another agency or individual that could provide the needed assistance; and information, education, skills training, and encouragement to help family caregivers provide the needed assistance.
Although programs that furnish various kinds of assistance are often described as either providing or referring for the assistance, dementia care programs frequently furnish assistance in a third way: information, education, skills training, and encouragement for the family caregiver who may then be more able to provide the needed assistance. Findings from the site visits conducted for this project indicate that this third way of addressing the components was used at least as often as either of the other two ways (direct provision and referral). One example is the way the four programs working with community-living persons with dementia addressed prevention and mitigation of behavioral and psychological symptoms of dementia. All four programs used information about particular symptoms, education about recommended approaches, skills training to practice the approaches, and encouragement for family caregivers to help the caregivers prevent or reduce the symptoms. This third way of addressing the components, referred to as "coaching" in at least two of the programs, was also being used for many of the other components.
The program administrators and staff interviewed in the site visits talked less frequently about referral to other agencies than about the other two ways of addressing the components. Moreover, when they did talk about referral, they often emphasized that it is only an effective option if accessible sources of the needed assistance are in the person's community. They pointed out that waiting lists are often long for assistance paid by public and philanthropic sources and that many persons with dementia and their families cannot afford to pay privately for the kinds of assistance they need.
All five programs conducted assessment, reassessment, and care planning activities that facilitated the provision of individualized, person-centered care.
Although person-centeredness is a desired attribute of high-quality dementia care, only one of the 37 clinical guideline and practice recommendation documents reviewed for this project focuses explicitly on person-centeredness. During the project site visits, however, program administrators and staff stressed the importance of person-centeredness. Their comments indicate that person-centeredness begins in the programs' assessment, ongoing reassessment, and care planning activities. Through these activities, the programs identify the unique characteristics, unmet needs, and care preferences of the person with dementia and the family caregiver and develop individualized care plans to address the identified needs.
The programs then reassess formally and informally, on an ongoing basis, to determine whether the original needs have been met and other needs have developed. Implementation of other components can be considered person-centered to the extent that it reflects information about the unique characteristics, unmet needs, and preferences of the person with dementia and the family caregiver that are obtained through the programs' assessment, reassessment, and care planning activities. Thus, for example, person-centeredness would mean that the information, education, skills training, and encouragement provided for the family caregiver to help the caregiver prevent or reduce behavioral and psychological symptoms of dementia are specifically targeted to the symptoms identified by the caregiver during the assessment and reassessment processes.
There are similarities and differences in exactly how the programs interacted with persons with dementia and family caregivers.
All five programs interacted directly with family caregivers. One program only interacted directly with the family caregiver and did not interact with the person with dementia. Three programs interacted directly with the family caregiver and the person with dementia to a lesser degree, and one program interacted directly with the person with dementia and the family caregiver to a lesser degree.
Four programs included in-person interactions with the family caregiver, and three programs included in-person interactions with the person with dementia. All five programs included telephone interactions with the family caregiver, and one program routinely included telephone interactions with persons with dementia who are able to respond. All five programs also used e-mail and regular mail to communicate with family caregivers, and three programs included home visits.
Programs with physicians or other PCPs on staff were able to provide diagnostic evaluations leading to a formal diagnosis of dementia. Other programs were able to refer for diagnostic evaluations, but a formal diagnosis was not a prerequisite for participation in any of the programs.
Program administrators and staff described how persons with possible dementia who did not have a formal diagnosis could receive or be referred for diagnostic evaluation. Three programs had physicians or other PCPs on staff who could provide diagnostic evaluation. The other two programs could refer persons with dementia who did not have a formal diagnosis to their own PCP for diagnostic evaluation.
Despite these responses about how the programs could provide or refer persons with possible dementia for diagnostic evaluation, the programs do not always require a formal diagnosis of dementia for the persons served in their programs. Rather, at least in some cases, they counsel the person with dementia and family caregiver to obtain a formal diagnosis and offer to provide a diagnostic evaluation or refer the person and family caregiver to a physician or other PCP who can provide such evaluation.
All five programs provided assessment and ongoing reassessment, but the assessment instruments and procedures they used vary.
Some of the programs used highly structured assessment instruments, and others used less structured instruments. Either way, the program assessments and reassessments were intended to obtain information about a wide array of personal characteristics, needs, concerns, problems, care preferences, and the available social supports and other resources of the person with dementia and the family caregiver. Some of the programs also included mental status tests, nursing, dietary and social work assessments, medical records and medication reviews, physical exams, and home safety inspections.
Some of the programs conducted assessments and reassessments in person, some conducted assessments and reassessments on the phone, and some used both methods. Most of the programs conducted assessments and reassessments directly with the person with dementia when the person was able to respond. In contrast, one program always conducted assessments and reassessments with the family caregivers, who were asked questions about themselves and the persons with dementia.
The assessments and reassessments used by the programs are generally intended to identify problems, strengths, and topics of high concern to the person with dementia or the family caregiver. At least two of the programs incorporate trigger questions about various topics that can be followed by additional questions if a trigger question elicits a response from the person with dementia or family caregiver that suggests concerns or problems.
Assessment was not a one-time activity for any of the programs. Some programs took more than one visit or call to complete the initial assessment. As previously noted, all programs reassessed formally and informally, on an ongoing basis, to determine whether the original needs, concerns, and problems had been resolved and whether other needs had developed.
Some of the programs provided medical management, and others did not.
Comfort Matters™, MIND at Home, and the Healthy Aging Brain Center attended to some medical issues, in part because they had physicians and nurses on staff. Program administrators and staff for the other two programs referred persons with dementia and their family caregivers to their primary care physician or another medical care provider if they suspected a medical problem.
All five programs had assembled information on many relevant topics to educate persons with dementia and family caregivers and support informed decision making.
All of the programs had information on many topics in print, online, on video, and in other formats. This information was used by the program staff to help persons with dementia and family caregivers understand various aspects of the person's condition, available medications, functioning, and behaviors. The programs also had information in all these formats to help family caregivers understand their own physical, functional, and other reactions to caregiving and to reduce risks to their own health. Much of this information is generally available to all people with dementia, family caregivers, and the public. The distinctive factor for all five programs is that they used their assembled information to select the information about topics and formats that are most relevant and appropriate for particular persons with dementia and family caregivers. Although some of the information was specific to the geographic area in which the program was located, there appeared to be a substantial duplication of effort across programs.
The four programs that were working with community-living people with dementia and their family caregivers interacted less often and less directly with persons with dementia than with family caregivers.
The two components, acknowledgement and emotional support for the person with dementia and assistance with daily functioning and activities for the person with dementia, call attention to several kinds of program activities that imply direct interaction with persons with dementia. Assistance with daily functioning, including personal care and ADLs, clearly involves direct interaction with the person with dementia, but the four programs that were working with community-living people with dementia and their family caregivers did not provide this kind of assistance. Instead, they provided information, education, skills training, and encouragement to help the family caregiver provide the assistance or referred the family caregiver to other agencies and individuals that may provide the assistance. Acknowledgement, emotional support, and assistance with activities could, in theory, be provided in direct interactions with the person with dementia without going through the family caregiver.
By design, one program, RCI REACH, had no direct interaction with persons with dementia. Program directors and staff of the three other programs that work with community-living people with dementia and their families described different amounts of direct interaction to provide acknowledgement, emotional support, and assistance with activities for persons with dementia. They also provided little detail about this kind of direct interaction. The program administrators and staff for two of the three programs said they work directly with persons with dementia "when possible," thus indicating one important barrier to direct interaction to provide acknowledgement, emotional support, and assistance with activities for persons with dementia.
At least two of the five programs have been disseminated to other sites across the country.
Program administrators and staff were not asked directly about whether their programs have been disseminated to other sites, but comments of program administrators and staff for two programs, BRI Care Consultation™ and RCI REACH, said that their programs have been disseminated to 20 or more sites across the country. These program administrators and staff also said they were providing staff training at the other sites. The program developer for BRI Care Consultation™ said his agency is licensing the other sites that are replicating that program and providing ongoing consultation, refresher training, and fidelity monitoring for those sites. The site visit for BRI Care Consultation™ included interviews with staff at four sites that are replicating the BRI Care Consultation™ program.
4.1. Possible Next Steps
Possible next steps to increase understanding about whether and how existing dementia care programs are meeting best practice standards could include using the 14 components developed for this project to assess additional programs. Information from additional programs would add to the findings from this project and allow comparisons among more programs about how particular components can be and are being implemented.
Other possible next steps could address two issues described in the preceding bullets: (1) that none of the five dementia care programs selected for this project had procedures in place to detect possible dementia in general populations; and (2) that the four programs working with community-living persons with dementia and their family caregivers were interacting less often and less directly with persons with dementia than with family caregivers, including identifying the need for direct interactions to provide acknowledgement, emotional support, and assistance with activities for the person with dementia.
Lack of procedures to detect possible dementia in general populations is an important issue because people with possible dementia whose condition is not detected are unlikely to be enrolled in dementia care programs that are intended to help them, including the five programs included in this project. Identification of barriers to detection of possible dementia and development of new programs or additions to existing programs to address this component of dementia care would benefit these people and their family caregivers. Identification of barriers to direct interactions with persons with dementia to provide acknowledgement, emotional support, and assistance with activities and development of new programs or additions to existing programs to increase such interactions would likewise benefit people with dementia and, in turn, their family caregivers.