Keeping Things in Balance: Family Experiences of Living With Alzheimer’s Disease

The Early Diagnosis Dyadic Intervention (EDDI) program provides a structured, time-limited protocol of one-on-one and dyadic counseling for family caregivers and care receivers who are in the early stages of dementia. The goals and procedures of EDDI are based on previous research suggesting that dyads would benefit from an intervention that increases the care receiver's active participation in his or her care plan, develops positive communication patterns between the caregiver and care receiver, increases knowledge and understanding about available services, and assists the dyad through the emotional turbulence of a diagnosis of Alzheimer's disease or other dementing condition. EDDI was developed in response to research and clinical findings that suggested that care dyads in the early stages of dementia and dementia care are able to engage in a dialogue about future preferences for care, and that this discussion could address some of the uncertainty and worry experienced by each member of the dyad. As part of a feasibility trial, 31 dyads participated in the EDDI program. Measures were obtained on the intervention's implementation, including the number of sessions attended, caregiver and care receiver ratings of treatment acceptability and effectiveness, and counselor ratings of treatment effectiveness. Participant and counselor evaluations of the EDDI protocol indicated that the intervention was acceptable and satisfactory to the caregivers, care receivers, and counselors, and that the intervention's goals and objectives were achievable. These findings indicate that individuals with early-stage dementia and their family caregivers are able to participate in and benefit from a structured intervention that focuses on care planning for future needs. Show more

Theory-generating methodologies can be used to add to our knowledge in areas that are already well researched in addition to areas that have not been extensively studied. The study presented here demonstrates how the grounded-theory method was used to generate a new theory of intergenerational caregiving. Analysis revealed five conceptually distinct, overlapping categories of caregiving. Only one of these includes what is generally considered to be caregiving, that is, hands-on caregiving behaviors or tasks. The other four types are not observable behaviors but are processes crucial to intergenerational caregiving and to an understanding of the experience of intergenerational caregiving. Show more

Family relationships are important for wellbeing across the lifecourse and are known to be important for people living with dementia, bringing benefits to self-esteem and identity, as well as providing support for people living at home. Recent research has explored the impact of dementia upon relationships. Much of this research is qualitative in nature and rarely included in systematic reviews, however, it has the potential to provide significant contributions to understanding the interplay between family relationships and dementia and to inform interventions. A systematic synthesis of qualitative research concerning the impact of dementia upon family relationships was undertaken, using thematic synthesis. Eleven articles were reviewed, which address the perspectives of people living with dementia and their spouse and/or adult children. The aims of this review are to illuminate what is currently known about the reciprocal influences between family relationships and dementia from the perspectives of the family (including the person with dementia); and to consider the implications of these findings for research and practice. Four super-ordinate themes were identified: ‘a shared history’, ‘negotiating the impact of dementia upon the relationship’, ‘openness and awareness’ and ‘shifting sands’. This synthesis contributes to an emerging field but also highlights gaps in current understanding of the impact of dementia upon relationships and in providing appropriate interventions. Implications for research and practice are considered. Show more