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Rehabilitation & Research Training Center on
Aging with Developmental Disabilities

Project Progress Summary

R11Supports for Informal and Formal Carers Caring for Adults with Intellectual Disabilities
       Affected by Alzheimer's Disease

Principal Investigator: Matt Janicki, PhD
Co-Principal Investigator(s): Lawrence Force, PhD, Diann Baxley, BScED, MAR, Jenny Overeynder, ACSW, Dalton, Philip McCallion, PhD, Kathryn Service, MS, RNC/NP, CDDN, & Tom Buckley, EdD


The following sections need to be filled in and submitted to RRTCADD.

    1. IRB Status
    2. Assessment Tools
    3. Recruitment Status
    4. Data Collection Status
    5. Project Modifications
    6. Results

    1. Publications
    2. Presentations
    3. Trainings
    4. Technical Assistance
    5. Grants Funded
    6. Recognition and Service

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Review of Literature
Hypotheses/Research Questions
Sample Population and Methodology
Data Collection and Measures
Data Analysis
Anticipated Findings and their Implications for Future Research
Research Activities
Scholarly Activities


Review of Literature

Given that the numbers of persons with ID affected by dementia will only increase (currently estimated at 9,000 in the US, but expected to double in the next 15 years -- Janicki & Dalton, 2000), there is a need to explore support models that can help families and other carers cope with early and mid-stage dementia of adults with ID. Continued community integration can only result from applying models of supports that enable people with Down syndrome and other intellectual disabilities to remain with their families or live supported in "dementia-capable" community care settings.

To help construct interventions or support programs relevant to community environments, it is necessary to better understand both the nature of the changes in support and caring provided in at-home situations and the progression of agency capabilities at handling dementia-related care in community care settings. Essential also is to understand how the caregiving situation changes as early to mid-stage Alzheimer's disease progresses and how it affects the family dynamics and continued commitment to care at-home. As described by a number of workers (Davis, 1999; Hammond & Benedetti, 1999; Udell, 1999; Visser et al., 1997) adults with DS can experience a precipitous decline in functions and care management demands can take a substantial emotional toll on family and staff resources (Service, Lavoie & Herlihy,1999). Many families providing at home care are what Tobin (1996) has characterized as long-term "adaptive copers" and may not experience the same types of stress as do carers of spouses with late-onset dementia (Smith, Tobin & Fullmer, 1995). However, even among "adaptive copers" the changing burden may cause disruptions in the commitment and ability of parents to continue as the primary carers. Kiecolt-Glaser et al., (2003) reported that carers of adults with dementia are particularly susceptible for stress and an aging of their immune system and run a higher risk of getting sick themselves. Thus, it is probable that "adaptive copers" may be doubly affected as they continue to provide care, but are now faced with a son or daughter exhibiting face-paced diminishing abilities. Thus, the proposed study targets families of adults with Down syndrome (DS) for two reasons. First, to better understand caregiving at home and the impact of caregiving when dementia is present, and second, to identify interventions that may help aging informal carers cope with dementia-related care for adults with DS. Given that the onset of Alzheimer's related dementia occurs about 15-20 years earlier in this group than the general population this group of families is well suited for this type of investigation.

This study will also compare caregiving demands and adaptations with findings from our previous study on dementia care in community residential programs. Previously, we assessed how group homes coped with ensuing dementia in residents, examined the characteristics of adults affected by dementia, and reviewed agency decision-making on whether to provide continued care or refer out (Janicki, McCallion & Dalton, 2002). Our findings indicate that presence of dementia among residents demanded greater staffing and clinical supports and increased need for cross-discipline, staff communication about residents. These data lead us to believe that an intervention aiding residential settings with one or more adults with dementia can work to head off management problems and aid in creating settings providing better care and a higher quality of life.


Hypotheses/Research Questions

We propose the following hypotheses:
  1. Parents who are long-term carers maintain coping strategies that permit adaptation to the demands of later-life dementia-related care.
  2. Parents who are long-term carers and who are faced with aggressive forms of dementia will experience more stress and consequently exhibit more stress-associated physical symptoms and parents who are long-term carers and who are faced with more typical progressive dementia will experience more less stress and consequently exhibit less stress-associated physical symptoms.
  3. Parents who are long-term carers benefit from Alzheimer's based mutual aid support groups and counseling when faced with later-life dementia-related care.
Among our questions, we pose the following: What is the impact of the onset and progression of dementia of the Alzheimer type on caregiving among carers of persons with DS residing in community environments? Secondary questions are: To what extent are families planning for contingencies related to the presence of dementia, what enters into the decision-making process for retaining or not retaining the affected adults at home, and what are the demands on care practices of families with someone with ID at home affected by dementia?
In phase one, we will examine the following:
  1. What are the comparative levels of care provided by parents to adults with DS who do and who do not show signs of onset of Alzheimer's disease?
  2. What are the comparative levels of care provided by parents to adults with DS who are coping with early stage of dementia?
  3. Can we identify key signs that help parents suspect that decline is beginning?
  4. What are the areas of support that enable parents to become more effective carers and copers when dementia is evident?
  5. What are the differences in levels of care provided by parents of adults with DS and staff of group homes faced with equivalent care demands?
To address these questions, we will 1) use data already obtained from studies we have conducted with group home staff, 2) institute an equivalent study, but with family carers in at-home situations (Phase 1), and (3) develop and aid agencies in implementing intervention programs for aiding family and formal carers (Phase 2). The first phase examines family factors associated with providing care at-home for adults with ID affected by Alzheimer's disease. The second phase is an assessment of the use of dementia care support group model vs. individual education and counseling as applied to older carers coping with care at-home of adults with ID affected by Alzheimer's disease.


Sample Population and Methodology

Phase One. In this phase, we will use a convenience sample of at least 50 families, including 25 caring for an adult with mild or moderate dementia, as defined by the Assessment for Adults with Developmental Disabilities (AADS) residing in New York, Massachusetts, and Florida. The other 25 families will be ones caring for an adult with DS, but free of dementia.

Phase Two. In this phase we will use a selective group method to identify volunteer agencies which wish to participate in an assessment of the efficacy of a support group vs. home counseling. By definition we will be limited to working on a third-party level with select agencies which opt into participating in our project. Subjects will agencies which form and run at minimum 6 support groups and/or provide home counseling to at least 20 families.


Data Collection and Measures

Phase One: A modified version of the Carer Activities Survey (CAS-ID) will be administered to family carers to ascertain the extent and nature of personal care services provided to their son or daughter with Alzheimer's disease (or other dementia). Data will be collected over a period of two months, with three data collection times over two months. Three data collection points are used to average out care time and to mitigate against data outliers (due to the influence of behavioral abnormalities or other untoward situational factors).

At Time #1, an adapted version of the AADS, a behavioral assessment scale that ascertains the level of impairment associated with dementia in adults with ID will be used. Also, related personal functioning and demographic information will be captured using modifications of tools developed by the investigators. At Time #1, the primary family members will be asked to complete the Modified Caregiver Strain Index (M-CSI - Thornton & Travis, 2003) and a modified version of the Greater Rochester Area Health Status Survey (GRAHSS - University of Rochester, 1999). The M-CSI instrument will be modified to capture carer data based on perceptions of strain a) 1 year ago and b) at present (to pick up shifts in strain perceptions). The M-CSI was chosen specifically to pick up a measure of perceived strain associated with caregiving and to permit comparisons to like data derived on non-ID carer populations. The GRAHSS will be modified to retain pertinent items related to the carer's health status, both current and previous and will be used to assess general health status.

As we have already collected preliminary comparative data from a number of group homes (using the CAS-ID and the AADS), these data will be used for comparative analyses. Data on family management functions and time spent in aiding with dementia related care issues will be correlated with data on adaptation, and will be used to assess knowledge and comfort with managing dementia. Also, a brief demographic questionnaire will capture salient family and caregiving demands data for correlational purposes.

Phase Two: Using the findings gleaned from Phase One, participating agencies will be aided in organizing and running a support group for parents, and in disseminating print and other media on in-home aids and care management. Working with local DD agencies and chapters of the Alzheimer's Association, we will identify a group of subject agencies. These agencies will helped to create and run a least six support groups to test out facility and efficacy of using a support group model with parents of adults with DS, and will be helped to organize orientation and information packages that help staff and family carers manage "dementia-capable" care to test out facility of individual information provision using a home-counseling approach. Agencies will be selected from a convenience sample, contingent on nature of their clientele, involvement with aiding families confronted with at-home dementia care, and willingness to undertake provision of support groups and family counseling. Feed-back loops using parent/carers, self-advocates, and agency/provider personnel, as well as measures of changes between pre- and post-intervention knowledge, perceived burden, control, and behavior/changes in care practices will enable us to assess the efficacy of the two approaches. From these findings we will develop a guide and training pack for replication in other settings.


Data Analysis

The first phase will be a cross-sectional study using a convenience sample divided into two groups, persons without AD, and persons with AD. Descriptive demographic statistics will be gathered and reported for the two groups and characteristics of the groups will be compared using t-tests. Averaged scores for the CAS-ID and other outcome measures will be developed from the three data collections and analysis of variance will be used to identify any significant differences among the two groups. The second phase will be a pilot study of a dementia care intervention that explores a model of providing care. Measures from the intervention will be collapsed into scores that will lend themselves for analysis


Anticipated Findings and their Implications for Future Research

Expected outcomes include a) identification of the nature of the challenges faced by aging carers of adults with DS affected by Alzheimer's disease, b) empirical validation of the CAS-ID concerning time spent in caregiving and problems faced with coping with dementia care, and c) a better understanding of the efficacy of support models that can be adopted by organizations such as The Arc of the United States and the Alzheimer's Association to help families with coping and adapting to dementia care in community environments. The results of our study will provide information on the realistic care demands of adults with DS and dementia and the extent family carers of these adults need special supports, which will give administrators and care agencies a rational basis for planning support services and allocating scarce resources. We anticipate that the RRTC will be able to provide, along with the Alzheimer's Association, a national training pack detailing potential intervention and support models in care management techniques and specific approaches for coping with functional limitations and death. Our technical assistance materials will enable organizations to more effectively respect the individual who is affected with dementia and adopt a perspective that promotes the personal dignity, autonomy, and personal welfare of the person.

Consistent with the primary tenets of what have been adopted and promoted by Alzheimer's Disease International, and which have become known as the "Edinburgh Principles," state and local administrators of care systems should be more proactive in helping families and other carers increase their "index of suspicion" and preparedness to provide special services, such as supports for diminishing behavioral competence and cognitive functioning (Wilkinson & Janicki, 2002). We contend that care management resources leading to "dementia-capable" environments can be deployed effectively only after agencies realize the demands of at-home care of persons with ID affected by dementia. Agencies serving a significant number of older adults with DS will need to anticipate the need for vigilance and prepare for the allocation of additional resources to enable residents to "age in place."


Research Activities

IRB Status
Active Protocol # 04-260

Tools Being Developed

Tools Being Adapted

Recruitment Status

Data Collection Status

Project Modifications

Project Progress to Date


Scholarly Activities




Technical Assistance

Grants Funded

Recognition and Service