Sally Rimkeit1, Jacqueline McIntosh2. 1. Fellow Royal Australia New Zealand College of Psychiatrists, Certificate Faculty Psychiatry of Old Age; Clinical Senior Lecturer, Psychological Medicine Department, University of Otago, Wellington, New Zealand; Founding trustee of Younger Onset Dementia Australasian Trust (YODAT). 2. Senior Lecturer, Victoria University of Wellington, Wellington, New Zealand; MArch (Professional) UNITEC, Auckland, New Zealand.
Abstract
OBJECTIVES: There are currently few facilities for people with younger onset dementia and they are placed by default into dementia care facilities designed for the elderly. There is limited understanding of how people with younger onset dementia and their care givers anticipate or experience aged residential care. This qualitative study has used semi-structured interviews to give voice to the opinions and perspectives of nine people with younger onset dementia and 11 care givers. METHOD: Interpretative Phenomenological Analysis was used for idiographic analysis, allowing examination of the lived experience of younger people with dementia and an iterative exploration of what their experiences mean. RESULTS: Themes of memory, autonomy and therapy emerged from the data. There is a need for a familiar memory of place in an intergenerational community and home-like setting. The loss of autonomy and ensuing stagnation or even institutional internment was much feared. Appropriate exercise and purposeful occupational activities as well as emotional support were valued therapies but often lacking for this group Conclusions: Emotional distress with the loss of a meaningful life can result from the placement of younger people with dementia into old age services. Development of age-appropriate services are required.
OBJECTIVES: There are currently few facilities for people with younger onset dementia and they are placed by default into dementia care facilities designed for the elderly. There is limited understanding of how people with younger onset dementia and their care givers anticipate or experience aged residential care. This qualitative study has used semi-structured interviews to give voice to the opinions and perspectives of nine people with younger onset dementia and 11 care givers. METHOD: Interpretative Phenomenological Analysis was used for idiographic analysis, allowing examination of the lived experience of younger people with dementia and an iterative exploration of what their experiences mean. RESULTS: Themes of memory, autonomy and therapy emerged from the data. There is a need for a familiar memory of place in an intergenerational community and home-like setting. The loss of autonomy and ensuing stagnation or even institutional internment was much feared. Appropriate exercise and purposeful occupational activities as well as emotional support were valued therapies but often lacking for this group Conclusions: Emotional distress with the loss of a meaningful life can result from the placement of younger people with dementia into old age services. Development of age-appropriate services are required.