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The APPLE Tree programme: Active Prevention in People at risk of dementia through Lifestyle, bEhaviour change and Technology to build REsiliEnce

Lead Research Organisation: Queen Mary University of London
Department Name: Wolfson Institute of Population Health

Abstract

We plan to make and test a prevention programme to lower older people's chances of getting dementia. The half of older people (aged 60+) who have problems with "cognition" (memory, orientation and other thinking) have more chance of getting dementia, so we will design an approach that works for them.

We will design our programme with people who will use, run and pay for it, and will think especially about how it will work for people from more deprived and minority ethnic groups, who are more likely to get dementia.

Our programme will help older people make changes that can prevent dementia. These are:

1. Being more socially and mentally active
2. Eating more healthily
3. Being more physically active
4. Looking after their mental and physical health
5. Stopping smoking
6. Reducing alcohol.

We will learn from therapies that have worked, but are too time consuming and expensive to run outside of research studies.

What we will find out
Stream 1: What do people with memory problems, including those from minority ethnic or more deprived backgrounds, do now to try to avoid dementia?

Stream 2: Do people with a higher chance of getting dementia get the right help from their GPs (such as blood pressure checks) to prevent it? What makes this more and less likely?

Stream 3: What should our face to face, personalised programme be like?
Which "app" design will work best in helping prevent dementia? Do people with memory problems, including people from vulnerable groups, use it?

Stream 4: How do people who will use, run and pay for our programme if it works, think it should be designed and used?

Stream 5: Do people who take part in our programme have less cognitive problems over two years than people who only receive an information leaflet?
If so, how did it work, and is it good value for money?

How we will do it
We will review past research and interview around 80 older people, their families and professionals, to find out how the NHS and society help older people live healthier lives to prevent dementia. We will look at how people think about memory problems and preventing dementia. We will use a database with 14 million UK primary care records, to see who is getting health care that can prevent dementia.

We will work with Age-UK, the Alzheimer's society, Care organisations, local authorities and Public Health England.

We will randomly allocate 704 people with memory problems without dementia, so they have an equal chance of receiving the new programme or an information leaflet.

We plan that the programme will be 10 group sessions over 6 months. We will offer individual sessions for people who cannot come to groups. Two facilitators will lead the groups. They will be trained and supervised by an experienced psychologist to keep to a manual so the programme is delivered in the same way each time. Groups will take place in a range of places to be accessible to all. We will ask people taking part to complete questionnaires, including a memory test and give a voluntary blood sample, before the programme starts and 6 and 24 months later. We will interview around 50 people taking part (including those who drop out) or running the groups to hear what went well and what could be better.

As more care and therapies move online, we risk leaving vulnerable people behind. We will ask engineers to design an easy to use app to support people to make the lifestyle changes that prevent dementia. We will support them to build it, then try it out with study participants, including people from vulnerable groups (we can lend them computers if they don't have their own and are willing). We can look at how this helps to get the new programme to people who need it most in future work.

Our programme could make a huge difference to individuals, the NHS and society, by reducing the number of people who get dementia.

Planned Impact

The programme will benefit
i) People with Subjective Cognitive Decline (SCD) and Mild Cognitive Impairment (MCI) (corresponding to half of those aged 60+) and their families. We will develop an intervention to reduce cognitive decline; and increase the proportion of older people at increased dementia risk who are aware and can access dementia prevention. This will reduce current inequities in timely diagnosis.
ii) Those implementing and commissioning health policy and care.
iii) Academia, building dementia academic capacity and increasing knowledge.


How we will ensure people with SCD/MCI benefit:

People at risk of dementia are the primary intended beneficiaries of the knowledge, intervention and implementation plans we will generate. We will work closely with those at risk of dementia and embed PPI throughout. We have engaged people with SCD/MCI in focus groups (NHS memory service, Single Homeless Project), and consulted family carers of people with dementia, to inform this proposal. Age UK and the Alzheimer's Society will work with us.

Short-term: participants will benefit from involvement, especially if the intervention is effective. We will collaborate with our community partners and PPI group to design a high impact, Knowledge Exchange Events programme. We will raise awareness about dementia prevention and disseminate findings through national media. In 2016, Brainfood, one of the pilot interventions that will inform the new intervention was featured on BBC London news.

Medium and long-term: we plan to slow cognitive decline and prevent dementia. The programme has significant potential for societal and economic impact: it could reduce health and social care service use and mitigate the devastating effects of dementia. The risk factors we are targeting are those the 2017 Lancet Commission identified that, if reduced by a tenth, could prevent a million cases of dementia worldwide. The Lancet commission activities will be a vehicle for international dissemination and impact.


Public health and policy impact:

Outputs would include:
1. A potentially successful dementia prevention intervention,
2. New understandings of social inequities and causal risk mechanisms; and
3. Innovative and cost effective strategies to engage marginalised groups in prevention.

We engaged with third sector, private, public and NHS stakeholders to develop this proposal and build links to ensure our project is multidisciplinary and multi-stakeholder. Public Health England (Alessi, preventable dementia lead and Rashbrook, National Lead for Older People), will advise (without cost) on implementation. We (Cooper/ Betz) recently presented the Brainfood intervention at a Foodmatterslive symposium at London ExceL; and the Cavendish Square Group, a collaboration of London's ten NHS mental health services, include it as a good practice case study on their website. The level of interest in the Brainfood pilot demonstrates a clear need for a lifestyle-focussed, dementia prevention programme; and the potential impact of a programme that is inclusive and has a robust evidence-base.
International Longevity Centre (ILC-UK) will write a policy report and publicise it to politicians, policy-makers, voluntary sector and industry. Stakeholders (NHS, Public Health England, Age UK, Alzheimer's Society, Jewish Care, Camden adult social care and Islington public health) and ILC-UK will raise awareness and deliver policy and practice changes at local, national and global levels. We will achieve impact through publications and conferences.


Academic capacity:

We will support future dementia leaders to develop independent research portfolios. Our plans include a lectureship, post-doctoral fellowship, 3 PhD studentships and introduce a cohort of engineers to social sciences and applied dementia research. We are international and multi-disciplinary: our programme builds innovative, boundary-crossing collaborations

Publications

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Related Projects

Project Reference Relationship Related To Start End Award Value
ES/S010408/1 01/01/2019 31/01/2023 £4,184,408
ES/S010408/2 Transfer ES/S010408/1 01/02/2023 31/12/2024 £1,649,350
 
Description We have completed all trial data collection. We are analysing it and plan to publish the findings later this year. I summarise here what we have found out so far.
1. We have completed our process evaluation of the trial, to find out if the APPLE-Tree intervention works, how it works. Our 10-session, co-designed intervention was experienced by participants as useful and used. 351/375 (93.6%) intervention-arm participants attended sessions, and 319/375 (85%) attended =5 main sessions (this was how we defined adhering to the intervention). Participants met a mean of 4.9/7.4 (66.2%) goals set towards living healthier lives. Participants told us that the intervention helped motivate them to make changes. The intervention supported behaviour change, through increasing knowledge and providing space to plan, implement and evaluate new strategies and make social connections. Feedback indicated that the intervention was flexible and inclusive of diverse preferences and needs.

2. We interviewed 26 stakeholders: commissioners and service managers (n = 15) and frontline workers (n = 11) from eight NHS and 11 third sector organizations throughout England to ask about how, if we found it to be effective in our trial, APPLE-Tree could work in practice. Stakeholders highlighted likely challenges in scale-up if we are to make personalized dementia prevention widely available. This will only be possible with increased funding of dementia prevention activities; integrated care systems, with their focus on prevention, may enable this. Scale-up of dementia prevention programs will also require clear outlines of their core and adaptable components to fit funding, patient, and facilitator needs.
3. We developed new ways to involve trial participants in research to shape the messages from it, in our visual ethnography study. We aimed to explore lived experiences of people with memory concerns, how participants engaged with this photography and codesign project, and how collaboration with an artist/photographer enhanced this process. Nineteen participants shared photographs reflecting what they valued in their daily lives, their experiences of memory concerns, and the intervention. Fourteen participated in qualitative photo-elicitation interviews, and 13 collaborated with a professional artist/photographer to cocreate an exhibition, in individual meetings and workshops, during which a researcher took ethnographic field notes. In our publication and exhibition, we explored visual research as a powerful tool for eliciting meaningful accounts from older adults experiencing cognitive change and to connect the arts and social sciences within aging studies.
4. We generated new research capacity. For example, two research assistants who worked on the project have successfully obtained funding to conduct PhDs on dementia prevention in our team - one Chilean government, one Dunhill Medical Trust funded.
Exploitation Route Academic: APPLE-Tree has informed multiple grant proposals, including co-applications with University of Melbourne. If the trial meets the primary endpoint, North London ARC II UCL-led bid, if funded, commit to fund an implementation project, and buy-in from East London NHS Foundation Trust to implement.
Policy: CC presented findings at the DeNPRU-QM policy research unit workshop on prevention in November 2024, which was attended by representatives of DHSC Dementia Team and NHS England including the National Clinical Director for dementia. We will organise a panel debate of subject experts in central London to mark the launch of the APPLE Tree policy report, to be prepared in 2025 after main findings are known. ILC are our partners who will support us in engaging key governmental stakeholders for this event. They will also organise a small roundtable event have an in-depth discussion about the policy implications of the APPLE-Tree project. The roundtable will complement the launch event by enabling us to engage senior stakeholders on what needs to happen next with regards to changes in policy.
Public: The visual ethnography project provided an important source to non-academic dissemination, with exhibitions in the House of Commons, Holy Sepulchre church and the Wellcome exhibition space.
Sectors Healthcare

 
Description In several exhibitions. Extract from press release: Now some of the participants have worked with professional photographer and artist Sukey Parnell Johnson to make and curate a public exhibition of photographs. The exhibition intends to spark conversations about how society supports, includes and respects people who live with memory problems. The exhibition will be displayed at the House of Commons, after which it will be open to the public at Holy Sepulchre in Holborn (the musicians church) for 3 months. Professor Claudia Cooper, APPLE-Tree Chief Investigator says "There are currently no guidelines for how health and social care services support people with memory problems that are not dementia, and yet as the exhibition shows, these symptoms have a profound impact on lives." "Age-specific dementia incidence rates have declined 13% globally in the last ten years, raising hopes that lifestyle and preventative health care measures can offset the expected increase in dementia cases from global gains in life expectancy2. "While we are excited by the possibilities heralded by the new drug Lecanemab, to slow the progression of Alzheimer's, which NICE is currently reviewing, it won't be suitable for many people living with dementia. "Lifestyle and preventable health changes can make a difference now, but people with memory concerns have told us they feel in limbo - between health and dementia, and don't know where to go for help." Arunima Himawan, Senior Health Research Lead, ILC-UK says "For all of us, memory means we can hold onto the people and places that are precious to us, the experiences that define us, and the things we never want to forget. Losing our memories to one extent or another is something we face - and fear - as we age." Rt Hon Daisy Cooper MP who has sponsored the House of Commons exhibition says "By raising the issues and developing better prevention strategies and support programmes, projects like the APPLE-Tree study benefit everyone."
First Year Of Impact 2023
Impact Types Cultural

Societal

Policy & public services

 
Description Dementia prevention in Chile 
Organisation Millennium Science Initiative
Country Chile 
Sector Public 
PI Contribution One of the researchers on APPLE-Tree was awarded a Chilean government 4-year PhD fellowship to work at QMUL and be externally supervised by Dr Claudia Miranda at Millennium Institute for Caregiving Research (MICARE) to look at how APPLE-Tree findings might relate to Latin American contexts.
Collaborator Contribution Co-supervisions
Impact https://www.medrxiv.org/content/10.1101/2024.03.01.24303612v1 Pre-print: also under consideration by peer reviewed journal.
Start Year 2020