Helpful post-diagnostic services for young onset dementia: Findings and recommendations from the Angela Project

Stamou, Vasileios, La Fontaine, Jenny, O’Malley, Mary, Jones, Bridget, Parkes, Jacqueline, Carter, Janet and Oyebode, Jan R (2021) Helpful post-diagnostic services for young onset dementia: Findings and recommendations from the Angela Project. Health and Social Care in the Community. ISSN 0966-0410 (In Press)

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There is a significant lack of evidence regarding optimum models for service provision in young onset dementia. Our study aim was to gather detailed information about services experienced as helpful by those with young onset dementia and family carers. The objective was to identify the core features of these services to inform service design, delivery and improvements. A qualitative approach based on appreciative inquiry was used, posing open-ended questions about services experienced as helpful, as part of a national UK survey of people with young onset dementia and carers. We used inductive thematic analysis to analyse the free-text responses. The resulting template was used as a basis for analysis of in-depth follow-up interviews, conducted to acquire greater in-depth understanding.

Two hundred and thirty-three survey respondents provided 856 examples of helpful support. Twenty-four follow-up interviews were conducted (two with dyads, so 26 participants in total: 8 with people with young onset dementia, 14 with carers, two with dyads). Twelve themes capturing the features of helpful services were clustered into three super-ordinate themes. ‘Person-centredness’ reflects micro-levels of person-professional interaction (positive attitude, flexibility, collaborative, user-friendly materials, in-person). ‘Functional consistency’ captures the meso-level, demonstrating that services were helpful when organised consistently with needs (age-appropriate, holistic, responsive, accessible). ‘Organisational coherence’, at the macro-level, emphasises the need for service integration, specialist services and service continuity.

Key conclusions are: that the needs for flexibility and a collaborative stance may be particularly important for those under 65 years with dementia, who have full lives and are used to being in control; to be age-appropriate, helpful services need to provide activities and opportunities suitable for active middle-aged people; and to be holistic, services need to provide for needs associated with rare dementias and be family-centred. Specialist services need to be commissioned and arrangements need to be stable over time to enable continuity.

What is known about this topic
• People with young onset dementia have distinctive needs.
• Most dementia services are ‘all-age’ and do not provide well for people with young onset.
• There is little UK research evidence on what sort of services are helpful.

What this paper adds?
• People with young onset dementia:
o find person-centred interaction helpful: when staff have a positive attitude, are collaborative and flexible, and provide in-person support and user-friendly information.
o find services helpful when they take younger age into account, consider the whole family, are accessible, and respond proactively to changing needs.
o find service systems helpful when there is specialist young onset dementia provision, continuity over time and integration across services.

Item Type: Article
Uncontrolled Keywords: younger people with dementia, carers, qualitative research, service delivery and organisation, person-centred planning
Subjects: Medicine and health > Clinical medicine > Dementia
Medicine and health > Person centered care
Related URLs:
Depositing User: Mary O'Malley
Date Deposited: 30 Mar 2021 16:00
Last Modified: 28 Aug 2021 07:15


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