Project Title:
Care pathways for individuals diagnosed with Young Onset Dementia (YoD)
Type of Research:
Mixed methods study (Development Grant)
Background:
In the UK 5% of people living with dementia have been diagnosed with young onset dementia (YoD). This refers to people who are under the age of 65 when diagnosed. Reportedly, their needs are significantly different from those of people living with dementia who are older, which is why generic dementia services are not suitable. As emphasised by recent reviews of the literature, services for people living with YoD need to be tailored to individuals’ needs due to the variability in their disease trajectory. Interventions that were perceived to be helpful were activity programmes, support groups, and services that provided information and education. However, interventions are often delivered ad-hoc or as pilot projects. Whilst literature has addressed support needs, there is little information on service design and delivery for this group.
Research Aim:
- To explore current service provision for people diagnosed with young onset dementia.
- To involve PPI representatives diagnosed with young onset dementia from the beginning of the study to inform the systematic review of literature on service provision.
- To undertake interviews with service providers in two CLAHRC regions, using questionnaires informed by people diagnosed with young-onset dementia in their role as PPI representatives.
Methods:
- A review of recent reviews of the literature on young onset dementia.
- Scoping of grey literature and online search on service provision published by NHS organisations and charities that target people living with YoD.
- Meeting with PPI representatives who were diagnosed with YoD and their caregivers in the two study sites. The discussions informed and provided the focus for the systematic review of the literature.
- Systematic search of literature of interventions designed to support people living with YoD.
- Interviews with service providers in the two study sites.
Key findings and outputs:
Findings:
Whilst the support requirements of people diagnosed with young onset dementia (YOD) are well documented, less is known about what needs to be in place to provide age-appropriate care. The literature review found that services enabled people with YOD to remain living at home for longer. However, service continuity was compromised by short-term project-based commissioning and ad-hoc service delivery. The evidence on the experience of living with YOD is not matched by research and the innovation needed to mitigate the impact of YOD. The inclusion of people with YOD and their caregivers in service design is critical when planning support in order to delay institutional care. Involving people with YOD in the assessment of research findings in terms of what is important to them, and inviting suggestions for solutions, also provides a way for co-designing services that address the challenges of accessing support for people affected by YOD.
Publications
Mayrhofer A, Mathie E, McKeown J, Bunn F & Goodman C(2017): Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review, Aging & Mental Health. 2017. dx.doi.org/10.1080/13607863.2017.1334038 (Link)
Mayrhofer A, Mathie E, McKeown J, Goodman C, Irvine, L, Hall, N and Walker M. Young onset dementia: Public involvement in co-designing community-based support. Dementia. 2018. DOI: 10.1177/1471301218793463 (PDF)
BITE-sized summary of the research
For more information about the study contact Dr Andrea Mayrhofer at a.mayrhofer@herts.ac.uk.
