Dementia Assessment, diagnosis and post-diagnostic support

One of the main reasons people seek a diagnosis is to have access to treatments, such as medications, which are offered to around 70% of people diagnosed. Discussing treatments can be stressful and complicated because medicines do not cure dementia, they only target symptoms and do not work in the same way for everyone.

This study aims to understanding how medications are described to people with dementia in memory assessment services, and see how that affects peoples understanding of the treatment and decision making. This will be done through three workstreams (WSs):

• WS1 will examine how medications are talked about appointments
• WS2 will use a large survey of older people to understand how presenting information about medications in different ways influences the decisions people make
• WS3 brings together the findings of WS1 and WS2 in a workshop of people living with dementia and their family members to reach agreement on communication methods that have the best outcomes for people with dementia

Chief Investigator: Dr Sarah Jane Smith

Leeds Beckett Investigators: Dr Rachael Kelley, Professor Claire Surr

Funder: National Institute for Health and Care Research, Research for Social Care (NIHR RfPB)

Funding amount: £149,945.00

This project aims to outline different models of MAS delivery across England and Wales, to identify and share good and innovative practice and to promote and support ongoing service development. The project has three phases:

• Phase 1: This phase aimed to describe what good or innovative practice in MAS might look like. We have produced a guide to supporting continued development, improvement and innovation in MAS
• Phase 2:  Through a survey we sought to understand how MAS in England and Wales are designed and features of good or innovative practice
• Phase 3: This phase aims to look in more detail at specific examples of good/innovative practice we are told about in the survey through a case study approach. Outputs will include a report sharing the case study examples and survey findings

Chief Investigator: Professor Claire Surr

Leeds Beckett Investigators: Dr Sarah Smith, Dr Laura Booi, Dr Leanne Greene, Rebecca Platt, Sally Brown and Amber Rithalia

Funder: NHS England and NHS Improvement, conducted in collaboration with Improvement Cymru

Funding amount: £72,866

Lewy Body Disease is the second most common form of neurodegenerative dementia. Upwards of 15% of people with dementia are living with have dementia with Lewy Bodies.

Funded by a UKRI Catalyst Award, and in collaboration with international Lewy Body Disease patient advocacy groups, and Lewy Body Society, this project co-developed 6 videos to promote the experience of living with Lewy Body. These videos are as follows:

1. Living with Lewy Body Dementia: Diagnoses and Living Well [3-minute video] - with international Lewy Body advocate Chris Maddocks
2. Lewy Body Dementia and Long-term care [3-minute video] - with author and consultant, Danuta Lipinska
3. The Importance of Diagnoses and Lewy Body Dementia [3-minute video] - with Dr Joe Kane, Psychiatrist
4. Lewy Body Dementia: Peer Support and Living with Lewy Body Dementia [3-minute video] - with Kevin Quaid, Author and international Lewy Body advocate
5. Living with Lewy Body Dementia: Fitness, Health and Wellbeing [3-minute video] - with Naomi Gleeson
6. Key symptoms of Lewy Body Dementia [3-minute video] - with Rachel Thompson, Admiral Nurse

For further information on Lewy Body disease, please visit Lewy Body International’s website.

Research lead: Dr Laura Booi

Funder: UK Research and Innovation Catalyst Award

Amount: £62,500

Black people of Caribbean origin are at higher risk of dementia than White British peers and are more likely to be diagnosed at an earlier age . They tend to access specialist services later in the illness, often in crisis. This is partly due to lack of dementia awareness and high levels of stigma. Caribbeans often turn to community organisations, such as Black Majority Churches, for help and support in times of need. These churches have strong traditions of activism where faith, health, and community service are inseparable concern. However, faith leaders report lacking knowledge, understanding and skills to support their congregants and members of the wider community with dementia and other mental health challenges. Harnessing the currently untapped potential of Black Majority Churches as community mental health assets could help increase dementia awareness, reduce stigma, improve wellbeing of people with dementia and their carers, and facilitate engagement with mainstream services. This study will work with key stakeholders to develop an intervention to  establish Black Majority churches as ‘dementia-friendly’ community hubs for delivering culturally-appropriate dementia awareness, training, information and support.

Chief Investigator: Prof Dawn Edge, The University of Manchester

Leeds Beckett Investigators: Prof Claire Surr

Funder: MRC PHNID

Funding amount: £149,996

The Sporting Memories Network provides free to access sporting reminiscence groups across England. This study was designed to evaluate whether introducing physical activity sessions within existing and newly established groups led to any positive benefits for group members’ physical and mental health and well-being.

Chief Investigator: Prof Claire Surr

Funder: Sport England

Funding amount: £23,500

We assessed the impact of COVID on MAS at a regional level comparing and contrasting the approaches, the impact on service uptake and satisfaction with services. This included services in Leeds, Hull, Bradford, Sheffield, Rotherham. We worked with the Strategic Clinical Network (Dementia and Older People’s Mental Health) to co-ordinate this work.

Leeds Beckett Investigators: Dr Sarah Jane Smith

Funder: Internally funded