Preparing Community Agencies for Adults Affected by Dementia

(Matthew P. Janicki, Ph.D.; Philip McCallion, Ph.D.; Arthur J. Dalton, Ph.D.)

Statement of Problem and Background
Conceptual/Theoretical Model
Research Questions or Hypotheses
Methodology
Progress to Date
Key Findings and Potential Implications


R.1.4b: Assessing the Impact of Community Dementia Care for Adults with Developmental Disabilities

Statement of Problem and Background



It is estimated that some four million adults are currently affected by Alzheimer's disease (AD) and countless more by other dementias (such as vascular, Parkinsonian, Lewy body, etc.). These numbers will increase by three-plus-fold within the next 20 years (Brookmeyer, Gray, & Kawas, 1998). We will see a similar increase among adults with intellectual disabilities (ID) as it has been estimated that in the U.S. that there may be 9,000 older adults with intellectual disabilities (including DS) possibly affected by AD and related disorders, and that this number will grow to some 30,000 within the next 20 years (Janicki & Dalton, 2000). Due to concerns raised over AD as an emerging public health issue, the lack of adequate diagnostic resources and care management alternatives are problems of growing importance.

Although the prevalence of dementia among persons with Down Syndrome (DS) is high, its prevalence among persons with other etiologies of ID appears similar to that of the general population. With respect to disease course, among adults with ID it appears to mirror that of the general population. However, for adults with DS, it has been reported that for some the course is compressed, the duration short, and the decline precipitous (Hammond & Beneditti, 1999; Tyler & Shank, 1996). Given this, providers of community services for persons with intellectual disabilities are being challenged to provide in-home and other community-based supports for carers and persons with ID affected by Alzheimer's disease and other dementias (Antonangeli, 1995; Bauer & Shea, 1986; Hammond & Beneditti, 1999; Janicki & Dalton, 1999; Janicki, McCallion & Dalton, 2000b; Janicki, Heller, Seltzer & Hogg, 1996; Kerr, 1997; Koenig, 1995; McCarron, 1999; Udell, 1999; University of Stirling, 2000).

Since the occurrence of dementia is expected to rise due to increases in longevity of adults with ID, agencies need to work to raise the "index of suspicion" among care staff and families (Keonig, 1995; McCarron, 1999), adapt their services to become "dementia capable" (Antonangeli, 1995; Janicki & McCallion, 2000), improve their diagnostic and technical resources (Dalton, Tsiouris, & Patti, 2000; Janicki & Dalton, 1999; Kerr, 1997), as well as their community-based care management supports (Holland, Karlinsky & Berg, 1993; Janicki, McCallion & Dalton, 2000a; Kerr, 1997; McCarron, 1999; University of Stirling, 2000), and begin to address ancillary clinical issues, such as maintaining communication with persons with dementia (Bauer & Shea, 1986; McCallion, 1999), and supporting end-of-life support functions (Service, Lavoie, & Herlihy, 1999).

In our original proposal, we posited that care systems have to support aging in place by addressing a variety of levels of programming and operations of day services or living situations serving persons with ID and experiencing dementia - including: the physical environment, staff training, and organizational culture. We proposed that these levels lead to successful adaptations of care systems so that adults with compound conditions, such as dementia and ID, could remain in their community for as long as possible. In this first project, we examined the factors that were present in agencies challenged by dementia care, identified one or more alternative community care models, and developed a model specialty care approach.


Conceptual/Theoretical Model



The project used community-based models of aging in-place for persons with ID and experiencing dementia.

Research Questions or Hypotheses



The project has three aims and objectives.
1. Assess how community agencies are providing stage-dependent services to older adults affected by dementia.
2. Define the characteristics of specialist service models for use in residential and day services for older adults affected by dementia.
3. Develop a training package for community agencies on dementia care management and services.

The research questions include the following:
1. The primary research question is what adaptations can agencies make to help their staff and community homes provide better care for someone with dementia?
2. Secondary questions are:
a. With advanced dementia and a critical mass of affected adults, is it practical to institute dementia specific group homes?
b. If so, under what conditions can these services be easily provided, at what cost, and with what training, program and staff resources?


Methodology



This project is being carried out at the University at Albany (New York). In the first phase, we carried out a survey that was designed to capture preliminary information on how agencies - that had exposure to dementia - reacted and performed. In this phase, we drew upon data from 54 group homes serving at least one person with ID who was reported to be diagnosed with or experiencing symptoms of dementia.
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Progress to Date



Although we got off to a late start, due to a lag in the contractual arrangements between University at Albany and the University of Illinois at Chicago, once funded we proceeded in earnest to carry out our project. In retrospect, we must report that the funds allocated to the project were insufficient and this proved to hamper its quick progress as we had to rely on graduate students and thus were subject to the vagaries of their availability and schedules. However, notwithstanding these impediments, we did accomplish a great deal over the first three years of the project.

In that time, we completed work on a national survey as well as local program evaluations and prepared a journal article reporting our results. We also presented several conference reports on the data at the annual meetings of the Gerontological Society of America, American Association on Mental Retardation, as well as the Nordic Association of Gerontology, the International Alzheimer's Congress, and the Congress of the International Association for the Scientific Study of Intellectual Disabilities.

We completed a training video on dementia and ID issues which is a integral component of our training pack and have developed a technical assistance workshop curriculum based on video, PowerPoint and interactive lectures to explain the fundamentals of dementia as a pathological aging condition, means of assessment and adaptation of program and physical environments and the design of treatment and consultative teams for dementia care and preparing "dementia capable" environments.

With regard to our technical assistance workshops, we have now held them in various parts of the U.S., as well as in Canada, Sweden, and Italy, affecting over 900 staff, administrators and family members. The information we have collected has been posted on the RRTCADD website at http://www.uic. edu/orgs/rrtcamr/dementia and has been disseminated in a series of handouts, usually modified for each intended audience. We have helped produce a set of international guidelines for community care that could be adopted by national organizations to help drive practice and funding. These, now known as the Edinburgh Principles, lay out a series of commitments to quality community care that providers and government agencies can adopt. These have been published asWilkinson, H.A., & Janicki, M.P. (2002) - [The Edinburgh principles with accompanying guidelines and recommendations. Journal of Intellectual Disability Research, 46, 279-284.].


Key Findings and Potential Implications



The homes surveyed served a mean number of 6.9 (s.d.=3.6) residents, whose mean age was 40.7 (s.d.=17.2; range 36 to 79). A majority of the homes (some 83%) had one or two persons who were diagnosed with or affected by symptoms of dementia (the balance had discharged the person with dementia). Data on the adults diagnosed with or affected by dementia indicated that they had an average age of 55.1 years (s.d.=14.7; range: 32-79). The mean age for those adults with DS and dementia was 52.6 years. There were slightly more males and about two-thirds were adults with DS. Among adults with DS, 86.2% were age 60 or younger (in contrast, 59.5% of the non-Down group were age 60 or younger). Mild-moderate ID was reported for two-thirds of the residents. About 60% had lived in the home for less than five years. Behaviors reported to be present mirrored the classic symptoms of dementia reported for persons in the general population.

We observed from our data that the approaches used by group home providers appeared to fall into three general categories: (1) continuing provision of aging in place supports; (2) developing an in-place progression setting, and (3) referring-out to a non-specialized long term care setting (i.e., generally nursing facilities). The premise for the aging in place model was that as the adult affected by dementia progresses through stages of disease (or dementia) at home, a range of appropriate supports were adapted and were provided relevant to each stage of need. Key factors affecting how this model was organized included agency policies (presence of commitment to continued care), home composition (the nature of the people in the home), physical changes (what losses the person with dementia experiences), staff capabilities (how staff adapt to a new level of care demand), and behaviors (what the person begins to express and do). From our observations, we noted that agencies maintained a general commitment to continued care in the home, but adopted a case-by-case (or personalized) approach to how this commitment was implemented. Agencies did not operate within set guidelines or common practices (most of their responses were trial and error), and minimal additional outside resources were made available as dementia progressed (except for those the agency itself contributed - such as, rotating in additional staff from its other homes). We also found that most did not offer focused staff training, few changes were made to the physical environment, and the behavior of the adult affected by dementia had an adverse effect on housemates.

The premise for the "in-place progression" model was that specialized staff and a specialized environment could best provide for long term care and that such care addressed the higher demand characteristics of the latter stages of Alzheimer's disease (or dementia). This model has been used in the generic dementia care field (as reported by Weaverdyck, Wittle, & Delaski-Smith, 1998), generally in association with services in a long term care facility. In generic nursing facilities, a separate dementia special care unit is set up for a cohort of adults with dementia, keyed to their functional level and needs. In agencies operating to support persons with ID, this model usually involves setting up a distinct home for the care of adults with dementia. Key factors affecting how this model is organized include case mix (level of needs of the persons in the home), length of stay, admission and retention criteria, staff composition (their background and disciplines), staff training, and physical design features. We observed that this model occurred mostly in agencies already operating a number of already existing homes and thus having the flexibility to designate one or more homes for this specialized purpose.

Our data revealed that in most instances (but not all) special staff preparation or training was not always implemented, and the development of the specialty homes was generally a reactive, not proactive process (that is, it responded to immediate dementia care needs rather than fully preparing for such needs). In most instances, an existing home was retrofitted to accommodate adults with dementia; however, in some a purpose built (and specially designed) home was established. These data and our conclusion are reported in greater detail in a forthcoming journal article: Janicki, M.P., McCallion, P., & Dalton, A. (In press) - [Dementia-related care decision-making in group homes for persons with intellectual disabilities. Journal of Gerontological Social Work].

We also began two further aspects of our project: (1) we collected data on in-place progression model programs run by a variety of agencies across the U.S. (including interviews with staff and administrators to assess decision making, program aspects, and clinical implications of congregating dementia affected adults in a single home); and (2) identified 12 homes in New York (that employ an "aging-in-place" model) that agreed to participate in our experiential design phase of the project (assessment of current program practices, training of a dementia-capable specialist, and re-assessment of program practices). With regard to the first, we are continuing to locate sites that agencies have set up as dementia specific homes and are working to do site visits and conduct interviews.

These data collection processes are on-going since the N is relative small and the cost involved with doing site visits large. We try to capture these data on an opportunistic basis and are building a photographic data base that can be used for explaining the model as well as for illustrative and training purposes. With regard to the second data collection endeavor, we have completed the first phase of data collection and are currently collecting the second phase data. In this project phase, we are examining the efficacy of using dementia specialists (select staff specially trained to mentor direct care staff on dementia care practices). In another follow-up project, we are also looking at the effects of care demands on staff time, associated costs of this type of care, and staff knowledge of this type of pathological aging.


R.1.4b: Assessing the Impact of Community Dementia Care for Adults with Developmental Disabilities

Statement of Problem and Background


(Please refer to study R.1.4a Preparing community agencies for adults affected by dementia)

Conceptual/Theoretical Model



Community-based models of aging in-place for persons with ID and experiencing dementia were used to frame this study.

Research Questions or Hypotheses



The aims and objectives for this project include the following:
1. determine how state developmental disabilities and aging agencies are planning and providing for the growing incidence of dementia in community programs.
2. determine the comparative fiscal cost of dementia care for persons with intellectual and developmental disabilities (I/DD) in community care settings.
3. develop informational materials for use buy state agencies and local providers on planning and funding services in support of community dementia care for persons with I/DD.

Methodology



Mailed survey to state and local DD agencies. Instruments and study design in place.
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Progress to Date


A national survey has been mailed to each state DD agency with a request for a response. Data are forthcoming. Agencies are being located and agreements negotiated for participation, data are being collected. Informational material development is in the preliminary stage.

Key Findings and Potential Implications



Based on our work over the first three years of the grant cycle, we did ferret out much useful information on program practices and the difficulties facing agencies as they try to adapt their services to cope with the increasing prevalence of dementia. However, we did not examine a number of features that would help put these findings in perspective and which could be useful for state administrators and agency executives in constructing planful responses to this emerging care challenge. These remaining issues include examining the fiscal implications of changes in level of care, staff time and allocation impact factors, and degree of localized administrative preparation (planning, fiscal management, resource allocations, etc.). Of particular relevance is the question of specific costs are associated with increased staff time and focus resulting from the presentation of dementia. We are now undertaking a study of some 30 homes (home selection and data collection is in progress) using instruments that capture staff occupation with ADL and other support functions in order to discriminate the changing nature and tasks of care as dementia progresses. We are looking to see if such measures can be linked to costs and used to help differentiate between dementia related care and non-dementia related care for setting reimbursement rates. When we are done with data collection, we will be able to produce technical assistance materials that should help agencies better serve adults with ID affected by dementia, whether at home or in out-of-home settings.


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