Support after diagnosis

Here you will find a collection of completed research studies relating to post-diagnostic support.  They have been selected by Dr Jenny La Fontaine, Senior Research Fellow, University of Bradford. Some of the links we provide are to the abstract only. For a full paper it may be necessary to subscribe to the site or to pay a fee.

You may also find it useful to visit The Angela Project research web page. The Angela Project was a three-year long research study that focused on both diagnosis and post-diagnostic support. It was the largest study of young onset dementia carried out in the UK.

Title – The experiences and perspectives of older adult mental health professional staff teams when supporting people with young-onset dementia
Summary – 2024 published paper, explored the experiences and reflections of health and social care staff who support people with young onset dementia within older adult mental health services.  Findings are discussed with recommendations relating to developing a standardised model of dementia care for young onset dementia which recognises and responds to the unique experiences of young onset dementia. Click here

Title – Optimising online peer support for people with young onset dementia
Summary – 2024 paper, research aimed to explore why people are hesitant to engage in online peer support, how to get more people involved and what works well. The insights obtained from this study will be used to develop a Best Practice Guidance on online peer support for people with young onset dementia. Click here

Title – Situating support for people living with rarer forms of dementia
Summary – 2023 study examined how rare dementia is characterised and how support is constructed and organised within the extensive dementia care and support arena. Reports in the literature show that people affected by rarer and young onset dementia are marginalised due to complex trajectories through medical and support sectors. This study provided a birds eye view of support for people with rarer dementias embedded within and alongside dementia care and support structures. The findings suggest relevant implications for both practice and research. Click here

Title – Establishing and sustaining high-quality services for people with young onset dementia: the perspective of senior service providers and commissioners
Summary – 2023 study aimed to understand the facilitators to developing and sustaining high-quality services for people with young onset and their families/supporters.  Click here

Title – Lasting lessons about the impact of COVID-19 on people affected by rarer dementias
Summary – 2023 study explored the impact of the first COVID-19 lockdown on people living with familial Alzheimer’s disease, behavioural variant frontotemporal dementia, familial frontotemporal dementia, dementia with Lewy bodies, posterior cortical atrophy and primary progressive aphasia and their carers in the UK and their self reported strategies for coping. Click here

Title – Good practice in needs-based post-diagnostic support for people with young onset dementia: findings from the Angela Project
Summary – 2022 Evidence on post-diagnostic support for people with young onset dementia is scarce. This study aimed to provide insight into ‘what works’ from the perspectives of people with young onset dementia and their supporters. Click here

Title – Helpful post‐diagnostic services for young onset dementia: Findings and recommendations from The Angela Project
Summary – 2021 first large scale UK study to report on specific features of helpful services from the perspective of people with young onset dementia and their families. The results of this led to a three-tiered set of recommendations for good practice. Click here

Title – The nature of positive post-diagnostic support as experienced by people with young onset dementia
Summary – 2020 study on service needs of people with young onset dementia have taken a problem-oriented approach with resulting recommendations focusing on reducing service shortcomings. This study aimed to build on ‘what works’ in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers. Click here

Title – Living with young onset dementia and actively shaping dementia research – The Angela Project 
Summary – 2020 article, Keith Oliver shares his experience of receiving a diagnosis of dementia and how he has since been involved in research projects, highlighting the benefits of Patient and Public Involvement for both the person living with dementia, as well as for the research group. Keith concludes by encouraging better Patient and Public Involvement practice in all projects, emphasising the benefits to all those involved in research. Click here

Title – The nature of positive post-diagnostic support as experienced by people with young onset dementia 
Summary – 2020 study aimed to build on ‘what works’ in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers. The findings suggest that positive services may collectively create an enabling-protective circle that supports young people with dementia to re-establish and maintain a positive identity in the face of young onset dementia. Click here 

Title – Receiving a diagnosis of young onset dementia: evidence-based statements to inform best practice
Summary – 2020 study was designed to improve the understanding of personal experience of younger people undergoing investigation for dementia. In this study, young people with dementia and their supporters have highlighted key components of the referral, assessment, and diagnosis that they deem to be absolutely essential or very important for informing best practice based on their own personal experience. Click here

Title – Services for people with young onset dementia: The Angela Project national UK survey of service use and satisfaction
Summary – 2020 paper reports the findings from a large-scale, UK-wide survey of people living with young onset dementia and family carers. The aim was to gather baseline information on current young onset dementia service delivery and explore how patterns of care link to quality of care, user satisfaction and costs, in order to inform commissioning and service provision. The findings highlight the variation in routes to assessment and diagnosis and in ongoing care management arrangements.  Click here 

Title – Football and dementia: A qualitative investigation of a community-based sports group for men with early onset dementia
Summary – 2016 qualitative investigation of the impact of a weekly group providing sport and physical activity for men with young onset dementia at Nottingham County Football club in the Community. The group benefitted the men with young onset dementia and their wives, providing a sense of normality, improving mood, offering peer support and physical activity. Click here

Title – Forget me not: group support for younger people with dementia
Summary – 2015 review of Forget-me-not group in Northamptonshire.  Highlighted value of group to participants as a strong source of peer support. Click here

Title – Palliative care in people with young onset dementia: An undiscovered area
Summary – 2015 discussion of the need for research exploring the specific needs of people with young onset dementia at end of life. Argues that the needs and experiences may be different than later onset dementia. Click here

Title – The use of assistive technology in the everyday lives of young people living with dementia and their caregivers. Can a simple remote control make a difference?
Summary – 2014 qualitative longitudinal investigation Assistive Technology for younger person with dementia and their family members.  Considered what factors influenced whether assistive technology became beneficial. Click here

Title – Behavioural interventions for enhancing life participation in behavioural variant frontotemporal dementia and primary progressive aphasia
Summary – 2013 overview of the approaches from neuro-rehabilitation and community-based services that can support engagement in activities and promote quality of life for people living with the diagnosis and their families. Addresses functioning, compensation, communication, self-care, environmental modifications, integration of carers/ families in rehab and community-based support groups/ activity groups. Click here 

Title – Does a structured gardening programme improve well-being in young onset dementia? A preliminary study
Summary – 2013 – Mixed methods study of therapeutic gardening intervention. Family caregivers reported a renewed sense of purpose and increased well-being in the person with young onset dementia, over one year, despite cognitive decline. Click here

Title – The CARE Pathway model for dementia: Psychosocial and rehabilitative strategies for care in young onset dementias
Summary – 2013 report on the design and implementation of the CARE, a care pathway for young onset dementia. Describes aspects of assessment required and resulting care planning needed. Click here