Title: Identifying modifiable psychosocial outcomes to maintain physical ACTIVity and promote independence in DEMentia (ActivDem study)
Funder: Department of Health and Social Care

Abstract: Research Question Which modifiable psychosocial factors lead to habitual physical activity (HPA) decline and functional dependence in people with dementia (PwD)? Background There are over 850,000 PwD and 670,000 informal family/friend carers in the UK. Informal carers account for 11.6 billion (44%) of the total dementia costs in the UK. Cost-effective strategies to help PwD remain independent for longer are vitally important for PwD, their family and society. Empowering PwD to maintain HPA (e.g. moving around home/community) after diagnosis may slow decline to dependence and disability. Increased HPA is associated with better mood, wellbeing, functional and cognitive abilities. The National Physical Activity guidelines 2019 suggest that maintaining/increasing HPA is beneficial to PwD, as strenuous activity may be unfeasible. PwD engage with less HPA than recommended, and disease-specific factors (e.g. cognition) do not sufficiently explain this. Findings in a similarly progressive neurodegenerative condition, Parkinson's disease, indicate that psychosocial characteristics of people with Parkinson's and their carers (e.g. anxiety/depression) predict HPA decline. This has not been explored quantitatively in PwD, but is considered a 'crucial' question by PwD and carers (discussed in Public Patient Involvement co-design workshops). Aims and Objectives This fellowship aims to: 1. Identify the most appropriate digital mobility outcomes (e.g. steps per day) to assess change in HPA in PwD 2. Identify psychosocial characteristics in PwD and carers which predict HPA decline in PwD. 3. Identify how social support and healthcare utilisation impact HPA decline in PwD. 4. Examine if HPA decline reflects decline in functional independence in PwD. Methods Work Package 1: I will conduct a systematic review to identify the most appropriate digital mobility outcomes to quantify HPA in PwD, informing HPA outcomes to support Work Package 2. Work Package 2: I will recruit 300 PwD and their carers from an ongoing longitudinal study (DETERMIND; https://determind.org.uk/), to take part in a continuous seven-day HPA assessment. This involves wearing a wearable sensor on their lower backs at baseline and annual follow-up. From DETERMIND, clinical (e.g. functional independence) and psychosocial characteristics (e.g. psychological state, carer burden) and care support (e.g. service utilisation, social support) will be assessed via questionnaires. Longitudinal statistical methods will identify key predictors of HPA decline in PwD, and examine the relationship between HPA and independence. Timelines for Delivery This will be a three year fellowship, with project milestones as follows: Year 1: Systematic review, ethical approval, baseline recruitmentYear 2: Finish baseline recruitment, begin annual follow-up, baseline data analysisYear 3: Complete follow-up and data analysis, academic outputs (e.g. publications), focus groups with PPI advisory group to review findings and co-design an intervention for future pilot work. Anticipated Impact and Dissemination Findings will be submitted to peer-reviewed journals (e.g. Alzheimer's and Dementia). I will engage dementia professionals via conferences and webinars through already-established connections (e.g. World Young Leaders in Dementia), and engage the public via local/national events, blogs, and liaising with media. Fellowship results will provide an evidence base to inform an intervention for future pilot work, aiming to support independence in PwD through HPA.

Lay abstract: Background Our population is living longer, leading to rising numbers of people developing dementia. People with dementia require significant care as the disease progresses, which may be stressful for themselves, their families and health and social care services. To reduce care needs, we need to ensure people with dementia can maintain their independence as long as possible.Maintaining everyday physical activities (e.g. walking, housework) may help people with dementia remain independent for longer. My PhD research showed that people with dementia are less physically active than older adults without dementia; this cannot be explained only by dementia-specific symptoms. I propose that psychological and social characteristics of both people with dementia and their carers (e.g. their ability to cope with their diagnosis, social support, mental wellbeing) may influence people with dementia's abilities to maintain physical activity. By identifying the most influential characteristics, we can use this information to provide the best health and social care support available to people with dementia and their carers. AimsI aim to identify which psychological and social characteristics in people with dementia and their carers, are associated with significant physical activity loss following diagnosis. I will use my findings to design an intervention to help people with dementia maintain physical activity and independence. Design and Methods I will ask 300 people with dementia, and their carers, to take part in a research study with two timepoints: baseline and one year follow-up. Participants will be recruited from an ongoing study (DETERMIND; https://determind.org.uk/) which is collecting information across time on psychological and social characteristics of both people with dementia and their carers, such as anxiety, social support, coping abilities and wellbeing. My fellowship will involve an add-on physical activity assessment which involves participants with dementia wearing a small activity monitor on their lower backs for seven days at each timepoint. My PhD showed that this is feasible and acceptable for people with dementia. Participants will answer three additional questionnaires relating to carers' management strategies, fall risk and what type of physical activity people participate in. I will assess change in physical activity over time, and identify the characteristics that are most influential to loss of physical activity and independence by using longitudinal statistical techniques. Patient, Carer and Public Involvement Thirty Public Patient Involvement contributors, including people with dementia, carers and professional carers helped shape this proposal, including identifying the research question and co-developing study aims to prioritise the needs of people with dementia and their carers. They identified potential predictors of physical activity decline; this helped me choose appropriate questionnaires. Contributors described staying active following diagnosis as 'crucial', saying that it allowed loved ones to 'keep going'. They felt carer-focused research was 'vital', describing them as key facilitators for activity. The NIHR RDS-NENC Research Consumer Panel and 10 contributors aided the development of my lay summary, public patient involvement and engagement plans. I identified contributors to consult throughout the fellowship; they will review documents written for the public (e.g. participant information sheets); help interpret preliminary and final results by drawing on their own experiences; help plan dissemination events/documents; and co-develop a future intervention for health and social care services. Dissemination plan I will engage care providers and third sector organisations through regional/national meetings to influence service provision, e.g. Newcastle City Council's Dementia-Friendly City Initiative, Admiral Nurses. I will speak at public events, and disseminate findings to dementia professionals through the World Young Leaders in Dementia network. I will work with Newcastle University's press office to disseminate journal article findings through the media, relaying research through human stories to maximise understanding and impact of my findings.

Research activity codes: 6.7 PHYSICAL
Health categories: NEUROLOGICAL