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 – 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, behavioral 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 – 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 – 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 1 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

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