The START project: Getting research into the patient pathway

Transcription

1 The START project: Getting research into the patient pathway Gill Livingston Department of Mental Health Science Camden & Islington NHS Foundation Trust

2 Dementia in the UK 820,000 people in UK with dementia Number projected to double by 2021 A large and increasing number of people are caring for a relative or friend with dementia. Cost > 17 billion. Family carers do most of caring saving state > 6 billion

3 How do family carers cope Often do not see themselves as carers They cope as everyone else does Types of coping strategies 1. Problem solving (traditionally what services offer) 2. Emotion focussed 3. Dysfunctional coping strategies

4 Consequences of different coping strategies We have done naturalistic cohort studies and systematic reviews Using more dysfunctional coping strategies mediated the relationship between burden and psychological morbidity Caregivers who use more emotion-focussed coping strategies in response to caregiver burden are protected from anxiety and depression, Those using problem-focussed strategies were not

5 The care burden- psychological Caring for someone with dementia is associated with: Isolation Carer burden (demands: anger, embarrassment; lack of privacy; loss of control etc) Psychological illness (40%) Anxiety depression

6 Impact of caregiver psychological morbidity Individual suffering Breakdown of care and institutionalisation of care recipient Financial and social burden for society Carers abusing person with dementia

7 What to do to help carers Health services traditionally try to solve problems and offer help with problems in cognition, function and behaviour. When people have dementia they have an unsolvable and deteriorating problem Family carers bear most of the burden leads to a high rate of anxiety and depression Associated with institutionalisation and abuse

8 NICE Recommendations Carers of people with dementia should be offered psychological therapy conducted by a specialist practitioner However, resources are not usually available

9 START Project Strategies for Relatives- HTA Pragmatic RCT aiming to determine the effectiveness of a manualised coping strategy programme in promoting the mental health of carers of people with dementia Uses psychology assistants to deliver

10 START Project Multicentre UCL partners. Development from early research showing that coping strategies mediate the pathway from burden to anxiety (and depression) Systematic reviews show that coping strategies intervention most successful in reducing anxiety symptoms No interventions in the UK Developed from Coping with Caregiving Intervention, successful in USA

11 START Four trusts-c&i FT, NELFT, NEPFT, UCLH (- BEH) Randomised controlled trial Plan to recruit 258 family carers Allows 20% drop out Follow up at 4, 8, 12 months, two years Use graduate mental health workers trained in the therapy 2:1 in intervention group to account for differences in individual therapists

12 Coping with Caring: Reducing Stress and Improving Your Quality of Life

13 Eight sessions manual based- carer fills in and keeps Education about dementia, carer stress and understanding behaviours of the person Behaviours the carer finds difficult and generating solutions Communication skills Challenging negative thoughts Getting emotional and practical support Planning for the future Increasing pleasant activities Skills to take better care of themselves, including relaxation Pleasant activities Maintaining improvements made

14 START Recruitment Planned Recruitment Referred Recruited C & I UCLH NELFT NEPFT

15 Recruitment pathways- hurdles and facilitators Excess treatment costs R and D Research as part of the assessment Recruiters embedded in trust pathways - DeNDRoN More studies mean less participants in individual studies

16 Results Carers 42% spouses, 44% children; 31% male; age years: mean 60 24% no school qualification;28% degree; 62.5% living with patient 72% white UK, 8.5% Black Caribbean, African or other; 3% south Asian. HADS A mean 8.5 SD 4.4 (protocol expected 7.2 SD 4); HADS D=5.5 25% work full time; 39.5% retired.15% children living with them Patients age 53-97; mean age 80 ;11% < 65; 10/28 not from UCLH 41% male; 45% no qualification; 19% degree. Patient 64% white UK, 9.2% Black; 3.4% south Asian

17 Results- People got different things from the therapy Most liked it a lot and felt understood Changed Able to look after themselves better Able to use it for the future Some did not find it beneficial

18 The therapy has been a wake up call and a turning point I liked the way he led me to find a way to resolve them (problems) myself the therapy will make a difference.. I think it should be available to all carers..i found the sessions beneficial as they helped me feel less guilty about me time. The relaxation is hugely helpful and will play a big part in my life I found this very helpful. She made me realise you have to feel good about yourself sometimes, which I do not often do. I will remember for the future It gives me more strength to face difficult times I was a bit tearful which I think was because I did not fully understand my dad's illness; and was certainly unable to cope with it. I found the sessions really useful in helping me understand the illness and the carer's role...really helpful, not only to myself but also for my dad.

19 Other things people felt it helped with Assertiveness Creating pleasant events (lots said this) Strategies for behaviour Information for the future Managing their own responses Understanding themselves Managing time Flexibility- see if something is right for them To stop yelling at husband Sleeping at night

20 Those who didn t like it This reminds me of when people tried to hypnotise me in the 1950s all unsuccessful I felt that these support sessions were not applicable to my husband s very early stage in his illness. Apart from anything else I found it unhelpful and upsetting to discuss behaviours that are not yet evident and may not be for sometime. I feel I have wasted your time and feel embarrassed about it. I didn t like the behaviour record

21 Acceptability and practicality of intervention 173 people offered intervention 87 TAU 5 immediately withdrew Another 19 had less than 4 sessions 2 had >4 but did not finish 4 + compliance 149/173-possible 86% No longer in study 13 intervention 11 TAU. Over 90% at 4 months

22 Conclusion We will have to wait for the quantitative results Qualitatively the participants liked it and thought they would use it in future in lots of different ways Its relatively cheap Saves a lot of time of more expensive professionals Picks up problems How are we going to get it in the patient pathways?

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