Behavioural Activation Self-Help for Wellbeing in People with Dementia (PROMOTE Study)

The Study Team A/Professor Paul FarrandDr Jo Woodford Dr Martin AndersonShanker Venkatasubramanian Wider Scientific Collaborators: Professor Chris Dickens Dr David Llewellyn Professor Obi Ukoumunne Dr Anna Adlam

Dementia: Increases in life expectancy (Christensen et al., 2009) – – Increased number of people living with chronic health conditions (Lubitz et al. 2003). Dementia a common chronic condition associated with aging (Fratiglioni et al. 1999). Why Is The Research Needed?

Projected Number of People With Dementia Worldwide (Millions) (World Health Organisation, 2012)

Projected Number of People With Dementia in Cornwall (Thousands) (Cornwall Council, 2009) HOWEVER! Only 46% of anticipated number of people with dementia on GP held dementia registers. Better than 43% national average. (Cornwall Director of Public Health Annual Report, 2012)

Particular Challenges for Cornwall Increased demand upon already scarce health and social care services Services within rural areas particularly under threat (Innes et al, 2011) ‘Rurality’: social networks; access; social exclusion; culture- influencing help seeking; stigma impact on recognition; (Nicholson 2008)

Depression and dementia: 20%-30% of patients with Alzheimer's Disease (AD) have depression – Higher rates in vascular dementia (44%) and dementia with Lewy bodies (60%) (Enache et al. 2011; Orgeta et al. 2014) Significant unmet need with respect to accessing evidence based psychological therapies (Van der Roest et al., 2009) Increased Rates of Depression

A Potential Solution BUT LARGE IMPACTS: 9 weekly 60 minutes sessions delivered by experienced geriatricians in health setting

Behavioural Activation (BA) Self-Help Intervention Intervention that aims to reduce depression by helping person: – Increase activities that bring value, enjoyed, can still engage in – The intervention goes at the speed the person wants – Starts off by identifying activities then grades these in terms of difficulty (easier first) – Then the easier activities identified are put into a diary first and spaced throughout week

Carer/Family Member/Friend Support Carer (family member/friend) trained to help support the intervention Provided with regular support sessions by a ‘Psychological Wellbeing Practitioner’ from the BeMe service Support help carer work through intervention Overcome any difficulties Provide guidance as to who to contact in the event of any difficulties being health/dementia related Support can be telephone based or face to face Between support sessions carer helps person with dementia work through the intervention booklet

Study Stages Address Intervention Acceptability Identify Adaptations/ Preferences Design Intervention Can Study To Examine If It Works & Acceptable Be Done?

Is the Proposed Intervention Acceptable If So How Should The Intervention Look And Feel? Community Engagement Cornwall Memory Cafe Network

Lived Experience Group Bude MC Bodmin MC Callington MC Crantock MC Fowey MC Downderry MC Launceston MC Liskeard MC Lostwithiel MC Newquay MC Central Newquay MC Padstow MC Pensilva MC Perranporth MC Polperro MC Saltash MC St Austell MC Truro MC Wadebridge MC CRCC Isles of Scilly MC St Just MC Camborne MC Helston MC Penzance MC Redruth MC St Day MC St Ives MC Carers Group Falmouth Dementia Alliance Mullion MC Falmouth MC Perranwell MC Penwith Dementia Alliance

Would you be willing to support the intervention? 447 acceptability questionnaires distributed to informal carers (27 community organisations) 60% of informal carers willing to support intervention – Further 38% ‘maybe’ willing but wanted further information Caution – 60 responses received (13% response rate) – But response rate equivalent to other studies Does The Proposed Intervention Seem Acceptable To Carers?

Preferences for Delivery As & When Weekly Fortnightly Monthly

Adaptations Required – People with Dementia (PwD) Interview study to identify adaptations required to the BA workbooks from people with dementia Ten face-to-face semi-structured interviews held with PwD across Cornwall (45mins to 60mins) – High acceptability for proposed BA intervention. – Language important – ‘Positive’ approach preferred – Use colour but ‘less is more’ – simplicity key to avoid confusion and assist with recall – Carer essential in helping support the workbook

Focus group study to identity adaptations required to the BA workbooks Two focus groups run over two sessions at Lostwithiel Memory Café with informal carers of PwD – High acceptability for proposed BA intervention – Language important – Positive approach preferred, not focussing just on the difficulties or problems – Suitable for mild-moderate dementia as a ‘beginners’ workbook Adaptations Required – Informal Carers

Key Adaptation Messages Importance of appearance and layout of materials – Simple and uncluttered materials, but colour to inject vibrancy/hope Important to build trust through face-to-face meetings with community groups and carer-PwD Engaging the carer is essential – Provision of reminders and prompts – Provide feedback and support – Develop trust Three meetings with PwD-carer before recruiting into next study – Especially due to the complexities of capacity to consent

Adapted Language Dementia Memory difficulties Carer Family/frien ds Psychological Wellbeing Practitioner Wellbeing Practitioner Not! Low mood/depr ession, recovery Living Well, Wellbeing, Making More Out of Every Day

The Developed Intervention Workbooks

Study aims: – Single arm feasibility phase II (Craig et al., 2008) study examining written behavioural activation (BA) to improve wellbeing (target low mood) in people with memory difficulties, supported by their family members or friends and guided by Wellbeing Practitioners – Examine main feasibility questions concerning: methodological, procedural and clinical uncertainties – Asks if this study “can be done” – If good levels of feasibility (including acceptability) results used to plan and design a pilot study and definitive trial Can Study to Examine Effectiveness and Acceptability be Done?

50 dyads (max) recruited over 6 months (by research team) Single arm trial: everyone receives the intervention Person with memory difficulties – Mild to moderate dementia – Low mood (4 + on Geriatric Depression Scale) – Living at home Family member of friend helping support the intervention – Has regular contact with the person with memory difficulties Consented & screened by research team, then allocated to WP Followed-up by research team at 3 months Study Design

Testing Recruitment GP & PCDP Recruitment Memory Service & Community Recruitment

With Thanks To The Funders Special Thanks To Everyone Who Has Given Up Their Time To Help With The Study!

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