Coping with young onset dementia: perspectives of couples and professionals

There has been little research examining experiences and coping processes associated with young onset dementia. Adjustment to such conditions involves couple relationships, family and wider social context, and is affected by available services and professionals involved. The aim of this qualitative study was to explore responses of couples and professionals to the unique challenges presented by young onset dementia. Participants were recruited by a South Wales memory clinic. Six couples and six professionals each engaged in a semi-structured interview, where they were invited to discuss their experiences, coping strategies and factors that impacted on their psychological adjustment. Interviews were recorded, transcribed and analysed using Interpretative Phenomenological Analysis. All of the couples in the study were in stable long term relationships. Five of the sufferers had Alzheimer’s disease and one had frontotemporal dementia. Professionals had a variety of roles within young onset services and had worked in dementia services between 4 months and 30 years. Findings included: couple participants employed a range of coping strategies, experienced substantial role changes within the relationship and sometimes struggled to maintain hope. Couples reported finding significant benefits from meeting regularly with other couples facing the same challenge, as part of their negotiation of identity. Professionals spoke of added challenges of working with people with young onset dementia, partly as a result of an increased tendency towards identification with sufferers. The study identified needs for clarity of information provision, flexible support and promotion of increased public awareness of young onset dementia. Findings highlight the importance of assessment of coping styles and support for positive adjustment throughout the diagnostic and treatment process, and the contribution and partnership of service users to service planning. Further research suggestions included identifying precursors of poor coping, recognition of positive consequences of dementia, and exploring perceptions and experiences of different professional groups