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Transitions in early‐onset dementia: A qualitative study exploring the experiences of people recently diagnosed with dementia
Author(s) -
Aspö Malin,
Cronfalk Berit Seiger,
Boström AnneMarie,
Kivipelto Miia
Publication year - 2020
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1002/alz.039099
Subject(s) - dementia , psychosocial , distress , memory clinic , disease , psychology , qualitative research , psychiatry , medicine , everyday life , gerontology , clinical psychology , social science , sociology , pathology , political science , law
Background Receiving a diagnosis of dementia before the age of 65 has a considerable impact on a person’s everyday life. The social impact most likely include work and family life, as the person may be the main or sole provider for the family. During the disease there are several critical points, some may differ from those identified in late‐onset dementia. Transitions are initiated by critical points or events, followed by a period of instability and distress, in which the person is vulnerable and at risk of making unhealthy decisions. This study aims to describe transitions and identify critical points in the initial phase of early‐onset dementia. Method Participants younger than 65 (mean age 60), with a MMSE score greater than 24, were recruited from a specialized memory clinic in Sweden. In‐dept interviews were conducted shortly after diagnosis, focusing on the period before receiving the diagnosis, on how the diagnosis has impacted their daily life, as well as their thoughts about the future. A preliminary analysis, using qualitative content analysis, was performed on nine interviews. Results In the preliminary results early (forced) retirement was identified as a main critical point, leading to both economic and psychosocial issues. The participants all knew about the later phases of dementia but had different thoughts how to approach this. Most of the participants actively searched for information about the disease and prognosis, as well as information about how to postpone decline, while others did not want any further information about the disease. Conclusion Several signs of transitions and critical points were identified, some of them being specific to people younger than 65. The results from this study can help professional caregivers to facilitate transitions and enhance the wellbeing and quality of life in young people living with dementia and their family.