Behavioural Activation Self-Help for Wellbeing in People with Dementia

(PROMOTE Study)

The Study Team

A/Professor Paul Farrand Dr Jo Woodford

Dr Martin Anderson Shanker 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)

Now 2030 20500

20

40

60

80

100

120

35.6

71.2

106.8

Now 20250

2000

4000

6000

8000

10000

12000

14000

9034

13000

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 MCDownderry MC

Launceston MC

Liskeard MC

Lostwithiel MC

Newquay MCCentral Newquay MC

Padstow MCPensilva MC

Perranporth MC

Polperro MC Saltash MC

St Austell MCTruro MC

Wadebridge MC

CRCC

Isles of Scilly MC

St Just MCCamborne MC

Helston MC

Penzance MC

Redruth MC

St Day MCSt Ives MC

Carers GroupFalmouth 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

Frequency Type Location0

10

20

30

40

50

60

70 Face-to-faceTelephone

E-mailSkype

HomeCommunity

GPBeMe

• 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/

friends

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!

Please get in touch at the stall, we would love to meet you and have a

chat.