Living with dementia: making a difference through research

Professor Bob Woods Dementia Services Development Centre Wales Bangor University [email protected]

Welcome back!

   2011 – What can we learn from people with dementia?

2012 – Dementia supportive communities 2013 – Making a difference through research

A quick recap: What is dementia?

      An acquired impairment Global cognitive functions (memory plus) Self-care and day-to-day function Clear consciousness Usually progressive Behavioural and psychological symptoms may include wandering, aggression, apathy, hallucinations, loss of inhibitions, repetition etc.

Types of dementia

      Alzheimer’s disease - 40% Vascular (multi-infarct) - 20% Lewy Body dementia - 15% Mixed Alzheimer’s & Vascular - 15% Other (including alcohol-related, CJD, Pick’s etc) - 10% Each type associated with distinct brain changes, evident at post-mortem

Prevalence of dementia in older people

(UK Dementia Report, 2007)

35 30 25 20 15 10 5 0 65 69 70 74 75 79 80 84 85 89 90 94 95+ Prevalence of dementia (%)

An older population

Millions 14 12 10 8 6 4 2 0 65+ 1985 1995 2005 2015 2025

An older older population

Millions 4 3.5

3 2.5

2 1.5

1 0.5

0 80+ 1985 1995 2005 2015 2025

Ageing population predicted to increase number of people with age related conditions such as dementia

 37,000 people in Wales with dementia in 2007  50,000 people in Wales with dementia in 2021  Number of people with dementia predicted to increase by 33% by the year 2021  Gwynedd from 1,719 to 2325   Anglesey from 905 to 1,223 Conwy from 2,062 to 2,793

Prevalence of dementia in Conwy

(Dementia UK report, 2007) Men Women Total Projected by 2021 18 13 31 31

30-64 65-74 75+

147 133 280 380 505 1,246 1,751 2,382

Total

670 1,392 2,062 2,793

% of over 65s

5.9

9.2

7.8

7.81

% of total pop.

1.3

2.4

1.85

2.45

How old are people with dementia?

(Prevalence figures for Conwy 2013 – UK Dementia Report)

30-64 65-74 75-84 85+

National Dementia Vision for Wales 2011 – 6 commitments

 To improve services    Younger people with dementia Dementia Coordinators Dementia targets      Timely diagnosis General hospitals Reduce inappropriate anti-psychotics Support carers Improve NHS in-patient units      To improve information To raise awareness To improve training

To support research

‘Delivery Assurance Group’

Dementia research is the poor relation of medical and health research

(Source: Alzheimer’s Research Trust, 2010) In the UK, for every person with cancer, £291 is spent on research; for dementia £61 is spent.

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Prime Minister’s challenge on dementia (March 2012)

‘As a society, we must make sure that people with dementia, their carers and families can be active citizens with the potential to live well with dementia at every stage of the condition.’ ‘We would like people to feel confident that we are making significant progress towards prevention, treatment and cure in the UK, and to be able to say that they wanted to take part in research and were able to do so.’

Prime Minister’s challenge on dementia (March 2012)

  ‘We will work towards recruiting 10% of patients into clinical trials.

Participation in high-quality research:  Consent to participate in research will be one of the conditions of accreditation for memory services.’

Research on dementia in Wales

   Welsh Government fund NEURODEM Cymru – ‘Registered Research Group’ since 2006 – hosted by DSDC at Bangor Cumulative project portfolio: 100 projects, with total value £41.6 million Particular strengths:      Research on genetic factors (Julie Williams, Cardiff) Research on Huntington’s disease (Anne Rosser, Cardiff) Research on Parkinson’s disease (Huw Morris, Cardiff; John Hindle, Bangor) Research on dementia care (Linda Clare, Bob Woods, Bangor) Research on risk and prevention of dementia (Linda Clare, Bob Woods, Bangor; Ness Burholt, Swansea; Tony Bayer, Cardiff)

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Opportunities to take part in high quality research

NEURODEM participant register:  agreement to be approached Current projects include:    Effects of being bilingual on dementia Individual cognitive stimulation (delivered by carer) Maintaining function and well-being in later life    CFAS Wales (Anglesey & Dwyfor) Lifestyle Matters Agewell centres

Why take part in research?

  Benefits to self:    Access to information or a potential new treatment approach, or contact with research team Chance to do something you may find enjoyable Ensure your perspective is represented Benefits to others   Improve support / treatments available to people with dementia and their families in the future Develop new knowledge that can help others

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What have we learned in the last 12 months?

Reminiscence groups Awareness in severe dementia Cognitive stimulation Life story books

Evaluating the effects of reminiscence groups for people with dementia and their carers: the REMCARE trial

      Joint reminiscence v usual treatment Pragmatic single-blind RCT 8 centres in Wales & England Up to 12 people with dementia and and and carers in each group Treatment manual 10 month period includes monthly maintenance sessions

Reminiscence groups for people with dementia and their care-givers: pragmatic 8-centre trial of: joint reminiscence and maintenance v. usual treatment ISRCTN42430123  ' This project was funded by the National Institute for Health Research Health Technology Assessment (NIHR HTA) programme (project number 06/304/229) and will be published in full after peer review in Health Technology Assessment. Visit the HTA programme website for further project information.'  ' The views and opinions expressed herein are those of the authors and do not necessarily reflect those of the HTA programme, NIHR, NHS or the Department of Health.'

Participants

     488 people with mild to moderate dementia (95% of target) Mean age 77.5

71% of carers were spouses 83% Alzheimer’s or mixed dementia (where recorded) Community resident at outset

Participants - 2

     Recruited mainly from Memory Clinics and CMHTs 268 randomly allocated to RYCT 219 randomly allocated to ‘treatment as usual’ 72% (350) available at ten-month follow-up (6% lost through death) More attrition in control group (34% v 23%)

Primary outcome measures

      Person with dementia – quality of life QoL-AD (13 item self-report) QoL-AD proxy (13 item carer-completed) Care-giver – psychological distress  GHQ-28 Results: no differences on these measures  Raised anxiety for family carers on sub-scale of GHQ-28 Why no effect?

Attendance at RYCT sessions

4 Number of sessions Number attended Percentage 0

29 11

1

9

2

22 7 3

3

7 3 4

5

5

6

6

7

9

8

17

9

21

10

34

11

41

12 Total

1 2 2 4 7 8 13 16 52 254 21 100 • 20% of those randomised to attend RYCT groups attend zero or one session • 29% attend less than half the planned 12 weekly sessions • 57% attended at least 3 of the monthly maintenance sessions • Compliance analyses • 3 months – attend 6 or more weekly sessions (70%) • 10 months – attend 3 or more monthly sessions (57%)

Results for those people who actually attend the groups

    Improved autobiographical memory at 3 months Improved quality of relationship (rated by person with dementia) at 10 months Improved health related quality of life (EQ-5D) rated by person with dementia at 10 months Increased stress for relatives at 10 months

Implications of joint approach

       Carers will meet other carers Carers will share knowledge of services (increased use of day services in treatment group) Carers will share experiences Carers will see other people with dementia Carers may become more aware of other aspects of the dementia journey Carers may see person ‘come alive’ in session and then return to ‘normal’ in between?

Could these aspects raise carers’ anxiety?

What do carers say?

  A care-giver explaining why she would recommend the groups to a friend stated: “people and carers in the same situations as oneself, they understand what we are going through”   Another commented on learning from other care-givers: “(the group was) very good, it showed how other people dealt with their partner”   Another highlighted the effects on the person with dementia (the care giver’s mother): “At first I was sceptical about this work, thinking it would not do much, but I was amazed when, after and in between group sessions my mum was remembering the past and trying hard to remember more. It’s good for the participants to have 1:1 with a facilitator and feel important. I suppose the participant feels less worthy having no memory and not being able to do things, these sessions make them feel worthwhile and special again. They come away with more confidence I think.”

Next steps

      The REMCARE final report is published as an HTA monograph Further work is in progress analysing qualitative data collected alongside the trial Further analyses will explore what is different (if anything) about those who continue to attend Further analyses will examine mechanisms of change and identify predictors of who benefits Comparisons with data from the SHIELD programme, where RYCT is being contrasted with a carer support programme, will further illuminate the REMCARE results http://www.hta.ac.uk/project/1655.asp

What have we learned in the last 12 months - 1

   Reminiscence groups for people with dementia and their carers are generally enjoyed, but do not appear to have lasting effects on quality of life (the REMCARE study) Some improvements for people with dementia who attend consistently May contribute to increased carer anxiety http://www.hta.ac.uk/project/1655.asp

Awareness in severe dementia?

  Often assumed that care home residents with severe dementia are lacking awareness of what is happening in their environment, especially where no longer able to express awareness through verbal communication.

BUT still possible to identify signs of retained awareness by carefully observing the resident’s behavioural responses to his/her surroundings .

Awareness in severe dementia

   Sensory appreciation still possible Social stimuli most often elicit a response We need to be more sensitive to the indications the person gives us of their response and interest     Eye movements Facial expression Sounds Subtle movements

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The AwareCare study (funded by MRC)

In 4 care homes in North Wales developed an observational tool that care staff could be trained to use Uses a combination of natural and prompted triggers Careful attention to response Trial of staff training in use of the tool in 8 care homes in North Wales Staff trained to observe carefully, and to use tool as a starting point for activity and communication Results indicated improved quality of life (as rated by relatives) in homes where staff were trained to use the tool

The Awarecare tool

‘Wendy’

   Wendy was not mobile, usually mute and sat with her eyes closed for most of the day. However, when shown a picture, a very subtle flickering of the eyes to glance at the picture could be observed and sometimes she would respond with a whisper. Furthermore, on one occasion when xxx began to play music to her and joked that it was a song that you could “boogie to”, Wendy responded with a strained, yet very deliberate smile and the staff were amazed that she still had such an ability.

What have we learned in the last 12 months - 2

  Quality of life (rated by relatives) of residents improved in care homes where staff were trained to use the Awarecare tool.

The tool helps staff recognise indicators of awareness in severe dementia

Cognitive stimulation (CST) groups

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14 Sessions (2 sessions / week)

45 minutes 1) Physical games 2) 3) 4) 5) 6) Sound effects, music Early memories Food Current affairs Faces / scenes    7) 8) 9) Associated words Using objects Categorising objects   10) Orientation (creation of map) 11) Using money 12) Number-related activity 13) Word-related activity 14) Quiz, consolidation

NICE-SCIE guidance on the management of the dementias (2006)

www.nice.org.uk

 People with mild/moderate dementia of all types should be given the opportunity to participate in a structured group cognitive stimulation programme … provided by workers with training and supervision … irrespective of any anti-dementia drug received …’

Maintenance Cognitive Stimulation trial

Orrell, Aguirre et al. NIHR ‘SHIELD’ programme        ‘Making a difference – 2’ developed – 24 maintenance sessions Open trial of ‘standard’ CST (7 weeks) 236 participants randomised to continue once weekly sessions for 6 months (MCST) or treatment as usual MMSE mean score 17.8

Mean age 83 42% care home residents / 58% community resident (Day care etc.) A third receiving ACHEIs (dementia drugs)

MCST preliminary results

    After open trial, improved cognition and quality of life At 6 month follow-up, MCST group have higher scores on QoL-AD At 3 month follow-up, MCST group have higher scores on proxy QoL-AD and DEMQOL and ADL Additional effect to that of ACHEIs

What have we learned in the last 12 months - 3

  Continuing Cognitive Stimulation groups weekly for 6 months after initial 7 weeks of sessions twice a week, leads to further improvements in quality of life Adds to effects of dementia drugs

Identity and the person with dementia

 Autobiographical memory     “It is an inescapable fact about human existence that we are made of our memories; we are what we remember ourselves to be” (Casey, 1989) relates to sense of identity reconstructive process - driven by emotions possible disconnection from early memories

Reminiscence therapy – conceptual roots

    Life review – Robert Butler (1963) Erikson – integrity v despair Person-centred care – the unique life story and biography of the person with dementia (cf. Kitwood) Relationship-centred care – identity is maintained through interpersonal relating

Developing life story work

    Previous study (Morgan & Woods, 2010) showed that life review leading to life story book led to improved autobiograhical memory and reduced depression in care home residents with dementia – books highly valued How important is the process of life review as opposed to the tangible life story book?

Life review based life story books compared with ‘gift’ life story books produced by relatives Ponnu Subramaniam - PhD project

Life Story Books • The idea of life story books or ‘This Is Your Life’ type scrapbooks has been adapted from child care work (Gibson, 1994).

• The story book, itself, is created by the person, using the person’s choice of pictures, props and words. • The life story book is a pictorial reminder of an individual’s life as directed by the individual. • The book include the items the individual chooses as important to him /herself.

• The caregiver can contribute by providing pictures and memorabilia from which the individual can select

Examples from James’s Life Story Book

Childhood

“My childhood life was very hard...difficult.... Once at age of 14, I ran away from my home and tried to join navy...they found out about my age...I was too young to join navy at that time...the navy people send me back home...my father got mad with me” – James laughing recalling his memory; 2 nd Feb 2011

Examples from James’s Life Story Book (cont...) “My wife and I loved our Malta holiday. Out of all our holidays...Malta holiday was the best...we really enjoyed...except the mosquito bites... (laughing)! - James Mary and James – Malta Holiday

Examples from John’s Life Story Book PHOTOGRAPHS REMOVED This is John’s wife Emma. The photo was taken before they got married. They used to cycle (push bike) together. John used to cycle 20 miles from _________ to ___________ to meet Emma on the weekends. He stayed at his mother-in-law’s house at No. _____________.

From John’s LSB: Page 8

Examples from John’s Life Story Book (cont...) PHOTOGRAPHS REMOVED John with his brand new motorbike. He was famous among his friends as ‘JOHN MOTORBIKE’. Only John had a motorbike among his friends. He is a Big Gun!

After this motorbike he bought his first car. This little car had 3 wheels and was red in colour. - From John’s LSB: Page

10

Examples from Sarah’s Life Story Book ___ Carnival was a major part of Sarah’s life. She actively took part in many events and activities in ____ Carnival throughout her life. Above: Sarah was crowned as ____ Queen in ___ Carnival in the year of 1933. She was 11 years old.

-From Sarah’s LSB: Page

7

Examples from Sarah’s Life Story Book (cont...) PHOTOGRAPHS REMOVED 52 years later, Sarah was crowning Queen Carol, ___ Carnival queen in 1985. Sarah was 63 years old.

-From Sarah’s LSB: Page

38

Examples from Sarah’s Life Story Book (cont...) PHOTOGRAPHS REMOVED Sarah’s main interest was baking and decorating cakes. She is highly talented in decorating cakes. Many people were impressed with her creativity and skills in baking and decorating cakes. Above, some of the cakes baked and decorated by Sarah. -From Sarah’s LSB: Page

33 & 35 (Hobby Segment)

Stimulate Memory & New information John’s feedback during life review session:  “Now I can see my father & mother”...He smiled... “I like them” (looking at his parents photo) – second meeting on 27-07-2010.

     Example 1: “Each time I sit with my mother with the book (LSB), she will give new information...the book helps her very much - Participant’s Daughter Example 2: “ We all never knew that our grandfather was an blacksmith..-Daughter’s reaction to the LSB.

Example 3: “The book is a great idea.....it is very useful... very stimulating” 

Improve Interaction & Communication • Emma (resident in another care home) looked very pleased with her husband’s life story book...kept saying ‘thank you’ every time turning to a new page. She recalled many memories and stories from her husband’s life story book. She enjoyed them. Daughter’s feedback about her mother: • Reduced repetitive talk from her mother (Emma) • The book helped her (daughter) to engage in meaningful conversation with her father & mother • The book (LSB) helps to talk and bring many stimulating memories between daughter and her mom, Emma.

• Now each visit...we can talk about meaningful things....

Entertaining & enjoyment      We really enjoyed all the process of making LSB (Relative) “I have no regret!”...nice...nice memories! (looking at drafted life story book) – 8 th meeting on 14-09-2010 My father enjoyed.....for a long time he never laughed like this....

This is about me...I’m excited...now, people will know me... great!.... dear me...dear me!.

We enjoyed very much throughout the project....we enjoyed each session....after each session we looked forward to another session...thank you very much.

Improve Staff Knowledge • I only started to work here (care home) for past 1 week but I know one person very well. Like I know him for many years. Do you know why? The book!

• ‘Now I know what she likes...baking cake’....next time I know what topic should I talk to her...about cake! – Care Home Staff.

• ‘Now we know more about her....good job’ – carer • This book should be created and brought together with the resident when they move into a care home’- Deputy Manager, Care Home.

To View & Evaluate Own Life • “I never thought that I had wonderful life...This book tells about that” – Participant • “Only now I know that I had so many holidays.... Can you believe..!

• You see (referring to her book), I had so many beautiful dresses...sometimes my daughter borrows from me!

Living Legacy • The book tells story of my father with pictures...his own words inside the book ... I will keep the book for his grandchildren and great grand children...They will be proud of him!

RESULTS- QOL-AD

Mean Scores on QoL-AD by group over time

45 40 15 10 5 0 35 30 25 20 QoL-AD-Life Review Qol-AD- Gift 1 2 3 Life review group, who received life review as a treatment, significantly improved on quality of life compared with usual care group (gift group) who received usual care at first 12 weeks, F (1,20)=5.11, p<0.05).

However, after usual care group participants received their own life story book as a gift, their quality of life scores increased 3.1 mean points compared to time 2 quality of life scores, F (1,20) = 0.08, p>0.05).

RESULTS- Autobiographical Memory Interview

Mean Score on AMI Total by group over time

50 40 30 20 10 0 AMItotal-Life Review AMItota-Gift 1 2 3 • Life review group increased ability in recalling autobiographical memory about themselves at post-intervention (Time 2), indicated significant intervention effect on total AMI scores, F(1, 20)= 19.92, p<0.01).

* However at follow-up indicated no significant intervention effect on AMI total scores. After having life story book developed by their relative as a gift, participants’ total AMI scores improved, F(1, 20)=2.92, p>0.05).

Summary of findings • Participants and relatives enjoyed the process and the outcome of the book.

• No kind of negative effect reported or observed.

• The entire 11 participants enjoyed taking part in life review process • Life Review process produce psychosocial benefits (QOL, AMI) for people with dementia & the book acted as a ‘maintaining tool’.

• The life story book created either by the life review process which is involving the person with dementia or by family members without involving the person is itself viewed positively by participants, relatives and care staff. • The creation of life story book appears to be a valuable therapeutic approach to aid a person living with dementia.

Effects on others

  Quality of relationship, rated by relative, significantly improves after life story book created Staff knowledge about the resident’s life, and staff attitudes (person-centred, hopeful) improve after life story book is available

Developing life story work

 Alternate products:  Memory boxes  Multi-media systems   Evaluation at an early stage – feasible (Subramaniam & Woods, 2010) Massimi et al (2008): ambient biographical display

Results • 5/6 participants showed improved quality of life.

• 5/6 participants showed improved autobiographical memory.

• All participants showed improvement or maintain depression scores.

Qualitative Results

Themes: Participants   Enjoyment, Excitement & Happiness e.g. -I feel like I’m famous. I feel very happy to watch it!

-I enjoyed. I have tears…you see!

Stimulating & Triggering e.g. -Its bring back my memories…I remembered that I love to play golf!

-I can see my life again…I remembered many things that I never able to remember. The movie tell about myself…songs and ballet make me happy.

Qualitative Results (Cont…) Relatives  Quality Time - Helped me to spend good ½ hour with____. Very productive and not like before.

-At least for ½ hour my brother happy  2. Feel Good, Better & Pleasure - Make me feel better because _____happy by watching the movie.

legacy - I’m glad that I helped ____ to leave her -Pleasure in seeing photos of mum’s life; obviously it covers some of my life too.

Qualitative Results (Cont…) Staff Improved knowledge and understanding -I got to know more about_____ and her family even though I have cared for her ten years and know some family members, still learnt a lot from the movie.

-Its helped me understand_____ more. Their past history makes them who they really are, and without information like this (movie), we really don’t know them

Conclusion • Out of 6 participants, 5 of them prefer movie over paper back life story book. One participant choose both.

• Participants, relatives and staff view life story book as a useful tool.

• There is indication that life story movie can be replacement to traditional life story book.

What have we learned in the last 12 months - 4

       Life review and life story books for care home residents (Ponnusaamy Subramaniam) 23 life story books completed 6 multi-media ‘life story books’ developed Life story books improve quality of life Relationship with relative improves Staff knowledge and attitudes improve Digital life story books lead to further improvements

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Coming very soon: New dementia projects

GREAT Trial: Living well with memory difficulties  Funded by NIHR HTA programme 2013-2016    Builds on previous North Wales trial of cognitive rehabilitation, using goal-setting with people with early-stage dementia North Wales is one of 6 sites for this project – recruiting in next few months Chief Investigator: Linda Clare

New dementia projects -2

    ‘Dementia and Imagination’ Funded by Arts & Humanities Research Council Building connected communities through creative arts activities with people with dementia Chief Investigator: Dr Gill Windle

Will research make a difference?

  If there was a drug that improved quality of life for people with dementia would we want to ensure it was available?

We need partnership between researchers, practitioners, people with dementia and carers to ensure the important questions are addressed, and, where there are answers, that they are implemented

Thank you!

        Thanks to colleagues and collaborators: The DSDC Wales team The NISCHR team Joan Woods, Training Officer, DSDC Ponnusaamy Subramaniam Professor Linda Clare Professor Martin Orrell The Alzheimer’s Society