Identifying modifiable psychosocial outcomes to maintain physical ACTIVity and promote independence in DEMentia (ActivDem study)

Study Code / Acronym
ActivDem
Award Number
NIHR301677
Award Type
Advanced Fellowship
Programme
NIHR Fellowships
Status / Stage
Active
Dates
11 January 2021 -
31 October 2024
Duration (calculated)
03 years 09 months
Funder(s)
NIHR
Funding Amount
£426,994.00
Funder/Grant study page
NIHR
Contracted Centre
University of Newcastle upon Tyne
Contracted Centre Webpage
Principal Investigator
Dr Riona Mc Ardle
PI Contact
riona.mcardle@ncl.ac.uk
PI ORCID
0000-0001-7959-3563
WHO Catergories
Models across the continuum of care
Tools and methodologies for interventions
Disease Type
Dementia (Unspecified)

CPEC Review Info
Reference ID30
ResearcherReside Team
Published12/06/2023

Data

Study Code / AcronymActivDem
Award NumberNIHR301677
Status / StageActive
Start Date20210111
End Date20241031
Duration (calculated) 03 years 09 months
Funder/Grant study pageNIHR
Contracted CentreUniversity of Newcastle upon Tyne
Contracted Centre Webpage
Funding Amount£426,994.00

Abstract

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 pounds (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.

Aims

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.