Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Apr;22(3):610-627.
doi: 10.1177/14713012231155516. Epub 2023 Feb 2.

Transitions: Experiences of younger persons recently diagnosed with Alzheimer-type dementia

Malin Aspö  1 , Leonie Visser  2 , Miia Kivipelto  3 , Anne-Marie Boström  4 , Berit S Cronfalk  5
Affiliations

Transitions: Experiences of younger persons recently diagnosed with Alzheimer-type dementia

Malin Aspö et al. Dementia (London). 2023 Apr.

Abstract

Receiving a diagnosis of dementia before the age of 65 has a huge impact on everyday life. Previously, the disease trajectory has mainly been described from the perspective of older persons. However, young persons with dementia are confronted with specific challenges, influencing the type of life-changing events, or 'critical points' that they may experience. The aim of this study was therefore to describe experiences of persons recently being diagnosed with young-onset dementia. In total, 14 participants with dementia due to Alzheimer's disease (10 woman/4 men) with an average age of 59 were included in the study. Interviews were conducted within 2 months after receiving the diagnosis and analyzed using qualitative content analysis with an inductive approach, resulting in three categories: (1) A life changing moment, (2) An ongoing process, and (3) Remaining in control. The findings show that receiving such a diagnosis was experienced by participants as a life changing moment, followed by them seeking to come to terms with the diagnosis and reflecting on its meaning, in which various strategies were adopted to remain in control. The current study highlights three critical points considering the diagnosis of young-onset dementia that warrant special attention and provides insight into factors related to delay in healthy transitioning after receiving the diagnosis, as well as factors that may facilitate successful transitions.

Keywords: Afaf Meleis; Alzheimer’s disease; dementia; early-onset dementia; qualitative research; transitions theory; young-onset dementia.

PubMed Disclaimer

Conflict of interest statement

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: MK reports being part of advisory boards for Combinostics, Swedish Care International, Roche, Biogen; personal lecture fees from Biogen, Roche, Nestle, Nutricia; a Governance Committee member: Global Council on Brain Health and WHO Board of Governors for the Guidelines development group.

References

    1. Alzheimer´s disease International (2019). World Alzheimer report 2019. Attitudes to dementia. https://www.alzint.org/resource/world-alzheimer-report-2019/
    1. Beattie A., Daker-White G., Gilliard J., Means R. (2004). ‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services. Health & Social Care in the Community, 12(4), 359–368. 10.1111/j.1365-2524.2004.00505.x - DOI - PubMed
    1. Bensing J., Rimondini M., Visser A. (2013). What patients want. Patient Education and Counseling, 90(3), 287–290. 10.1016/j.pec.2013.01.005 - DOI - PubMed
    1. Cabote C. J., Bramble M., McCann D. (2015). Family caregivers’ experiences of caring for a relative with younger onset dementia: A qualitative systematic review. Journal of Family Nursing, 21(3), 443–468. 10.1177/1074840715573870 - DOI - PubMed
    1. Chaplin R., Davidson I. (2016). What are the experiences of people with dementia in employment? Dementia, 15(2), 147–161. 10.1177/1471301213519252 - DOI - PubMed