Friday, 14 January 2005 - 10:00 AM
This presentation is part of: Family Caregiving with Older Adults
The Transition to Caregiving: Impacts of Early Dementia on Marital and Family RelationshipsKathryn Betts Adams, PhD, Case Western Reserve University.
Background: Recent advances in available medications for early and moderate Alzheimer’s disease have meant a concomitant emphasis on early diagnosis and treatment for persons with symptoms of cognitive impairment. Yet researchers and those working with families at this early stage in clinical and community settings are not fully aware of the types of effects this diagnosis and the early stages of dementia may have on families and marital relationships. Among the research questions fueling this study were: What are the major concerns of close family members of persons newly diagnosed with Alzheimer’s disease or MCI? What types of emotional reactions are typical or atypical? Can we identify target areas for social work intervention? Methods: Semi-structured individual interviews with 20 prospective caregivers who were spouses or adult children of persons with early/very mild dementia were tape recorded, transcribed and analyzed with N-VIVO qualitative data software. The themes evolving from preliminary analysis of these qualitative interviews led to analysis of survey data available from the Alzheimer’s Disease Research Center at Case Western Reserve University/University Hospitals of Cleveland. Measures of negative impacts (self-reported relational deprivation, overload, burden, and depression) and positive impacts (uplifts and gains) from the first visits of approximately 600 caregivers (or “research partners”) of persons with dementia were analysed to compare responses from those family members whose care recipients were assessed to have mild dementia (.5 or 1 on the Clinical Dementia Rating (CDR)) versus those with care recipients with moderate or severe dementia (CDR of 2-5). Findings: Four themes were apparent in the preliminary analysis of the interviews. First, the prospective caregivers experienced marked grief and relational deprivation early in the dementia process. Nearly all of the family members interviewed were tearful as they described the impact of dementia on their loved ones and the related impact upon their relationships. A major impact upon them personally was the reduced ability to confide in or share decisions with the person with dementia. The second theme was self-doubt or self-criticism about performance of the caregiver role. A third theme was pride and confidence in assisting the person with dementia to adapt to the memory loss and related changes through various strategies. A fourth theme described by these prospective caregivers was the strengthening of relationships through shared concern about the dementia, and renewed feelings of love and empathy. Despite the qualitative findings suggesting high levels of relational deprivation and grief in these prospective caregivers of persons with mild dementia, they were found to have significantly lower negative impacts and greater positive impacts than those with more severe dementia in the aggregate. Nevertheless, there were clinically relevant levels of negative impacts in a segment of the early/mild caregivers. Implications: Further research is recommended to identify risks for poor adjustment to the transition to the caregiving role. Among the social work practice implications from this study is the need to offer comprehensive mental health services to families with early dementia with particular focus on helping the prospective caregiver successfully adapt to the role.
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