What can we learn from people with Alzheimer�s disease?

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					What can we learn from people
  with Alzheimer’s disease?

           Professor Bob Woods
Dementia Services Development Centre Wales
             Bangor University
Alzheimer’s disease and dementia?

   Are they the same thing?
   Yes and No!
   Dementia is the family name for a number
    of conditions, of which Alzheimer’s disease
    is the most common
   So, Alzheimer’s disease is a dementia, but
    not all dementia is Alzheimer’s disease
          So 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.
The scale of the condition – prevalence
        (Dementia UK report)

          <65      0.1%
          65-69    1.3%
          70-74    2.9%
          75-79    5.9%
          80-84    12.2%
          85-89    20.3%
          90-94    28.6%
          95+      32.5%
Prevalence of dementia in older people
               (UK Dementia Report, 2007)

  15                                           Prevalence of
                                               dementia (%)
       65-   70-   75-   80-   85-   90- 95+
       69    74    79    84    89    94
      An older population



           1.5               1971

                 80+   85+
                   North Wales

   Number of people with dementia
    projected to increase by 35% by the year
   (Alzheimer’s Society, UK Dementia Report, 2007)
Dementia UK report
  Prevalence of dementia in Conwy
               (Dementia UK report, 2007)

         30-64    65-74   75+     Total   % of     % of
                                          over 65s total
Men      18       147     505     670     5.9      1.3
Women    13       133     1,246   1,392   9.2      2.4
Total    31       280     1,751   2,062   7.8      1.85
Projected 31      380     2,382   2,793   7.81     2.45
by 2021
  Estimates of numbers of YPWD (30-64) in
  North Wales (Dementia UK report, 2007)

             Male    Female     Total
Anglesey     12      8          20
Conwy        18      13         31
Denbigh      16      11         27
Flintshire   24      17         41
Gwynedd      19      13         32
Wrexham      21      14         35
Totals       110     76         186
       Common types of dementia
              (UK Dementia Report, 2007)

   Alzheimer’s disease - 62%
   Vascular (multi-infarct) - 17%
   Mixed Alzheimer’s & Vascular - 10%
   Lewy Body dementia - 4%
   Fronto-temporal dementia (including Pick’s) - 2%
   Parkinson’s Disease Dementia – 2%
   Other (including alcohol-related, CJD etc.) - 3%
   Each type associated with distinct brain changes,
    evident at post-mortem
              105 years ago…

   In 1906, Alois
    Alzheimer described
    the case of Auguste
    D. (died aged 55)
   Memory loss,
   ‘an unusual disease of
    the cerebral cortex’ –
    plaques and tangles
But what does it mean for a person
       to have dementia?
   The public view
       Tragedy?
       Suffering?
       A living death?
Contrasting images (1989)
But what does it mean for a person
       to have dementia?
   The public view
       Tragedy?
       Suffering?
       A living death?
       Nothing can be done?
       Worse than death?
   What do people with dementia say?
   Lesson 1

‘I’m still a person’
       Personhood and dementia

   It is a ‘Hypercognitive culture’ which categorizes
    those with severe dementia as ‘non-persons’
    (Post, 1995)
   Abilities and capacities do remain - not all is lost
   Emotional sensitivity and spiritual awareness
    possible (Sacks, 1985)
   Aesthetic and relational aspects of well-being
    possible in severe dementia (Post, 1998)
         Creativity in dementia –
        Willem de Kooning 1904-1997
   “'Style,' neurologically, is the deepest part of one's
    being, and may be preserved, almost to the last, in a
    dementia." (Sacks)

   “De Kooning's art in the '80s lost much of its former
    character, most obviously athletic vigor, while not only
    retaining a de Kooning-esque feel but introducing
    unexampled levels and resources of style. These
    paintings stand alone in his career and in the world.”
   Schjeldahl 1997 Arts Forum
         Creativity in dementia –
                 Willem de Kooning
   “What does "knowing how to paint" mean? Nothing in
    theory, practically anything in practice. Late de Koonings
    strike me as embodied theories of painting: meaning
    nothing, and meaning it with precision. They are pictures
    of pure capacity. The work entails fantastic abilities not
    even for their own sake, but for no sake.”
   “I propose that late de Kooning is the degree zero of
    painting, attained not through simplification but, fully
    complex, through being emptied of anything not
    identical with its execution. This work henceforth defines
    the verb to paint.”

   Schjeldahl 1997 Arts Forum
            Lesson 2

‘I’m still living’ – quality of life is
      possible in dementia
    How can we evaluate Quality of
       Life (QoL) in dementia?
    QOL-AD (Logsdon et al, 1999)
   Simple self-report measure of QoL
       13 items, 4 point scale
       E.g. Energy; Fun; Money; Physical health;
        Friends; Family etc.
       Completed in interview with person
       Domains validated from focus groups
        (people with dementia & carers) &
        questionnaires (professionals)
Can you rely on what people with
dementia tell you about their QoL?
   Scores are internally consistent
       (N=201: alpha = 0.82)

   Scores are similar from one week to the next
       (N=38: Total score 0.87 intraclass correlation)

   Scores do not depend on who is the interviewer
       Inter-rater reliability (N=38 Total score 0.96 intraclass coefficient)
       Sub-scales Kappa’s 12/13 ‘excellent’ agreement

   Scores are associated with observed well-being
       (Dementia Care Mapping r=0.39 p=0.05)
    Does QoL decline as memory gets
   Sample of 201 people with dementia in
    residential homes / day centres (MMSE 14.4/30 sd 3.8)
   QOL-AD not associated with memory and
    cognition measures such as ADAS-Cog or MMSE
   Higher in those with moderate dementia than in
    those with mild dementia on clinical dementia
   Relates to depression, not cognition
   (Thorgrimsen et al., 2003)
Does QoL reflect lack of insight and
     100 people with early-stage dementia and their
      carers in North Wales were interviewed
     Awareness evaluated in several ways:
          Global rating of interview
          Discrepancies between person’s rating of function in 3
           domains and those made by carer
               Memory *
               Day-to-day function *
               Social function
          Discrepancy between performance on a memory test and
           the person’s rating of their performance
     There is a small degree of association between some
      measures of awareness and QoL-AD scores, but
      mediated by depression scores
     (Clare, Woods et al. – the MIDAS project)
   ‘We’re LIVING with
    dementia, not
    dying from it!’
The ACE Club (for
  younger people with
  dementia and their
  carers), Rhyl
                         Alzheimer’s Society Living
                         with Dementia programme
         Lesson 3

The importance of relationships
        Quality of life and quality of
   Long-established findings that quality of
    relationship, as rated by care-giver,
    predicts carer’s level of strain / depression
    (e.g. Morris et al., 1988; Williamson & Schulz, 1990)
   Could person with dementia also rate the
Can people with dementia rate the
   quality of the relationship?
   77 people with dementia and care-givers participated
   Person with dementia average age 77.5; 57% female
   Care-giver average age 68.9; 62% female
   78% spouses; 90% co-resident
   Mean duration of memory problems 3.1 years (range 1-10)
   60% of carers inputting more than 50 hours per week
   16% carers report significant symptoms of depression
   Interactions video-taped – puzzle and meal planning 10-15
Can people with dementia rate the
  quality of the relationship? - 2
   Several brief relationship questionnaires were tested
   People with dementia were able to complete these
    consistently and reliably
   Positive Affect (PA) Index (Bengston, 1973)
       5 items
       6 point scale (visually presented)
       Communication quality, closeness, similarity of views on life,
        engaging in joint activities, overall relationship quality
   Quality of the Care-giving Relationship - QCPR (Spruytte
       14 items
       5 point scale (visually presented)
       Two sub-scales: warmth and absence of criticism
     Did people with dementia and
     carers agree in their ratings?

   Good agreement on warmth and positive
   Less agreement on criticism
   Carers rate the relationship less positively
          Different perspectives?

   What predicts difference in scores
    between person with dementia and carer:
       Positive Affect Index: Relative’s Stress Scale
        only predictor (8% of variance)
       QCPR: Relative’s Stress Scale only predictor
        (32% of variance)
       Severity of memory impairment not related to
Association between relationship ratings and
     ratings on video-interaction tasks

   Person with dementia ratings predict
    video-interaction ratings just as well as
    carer ratings
    Quality of life of the person with dementia
    (QoL-AD rated by person with dementia)

   QoL-AD relates to Positive Affect Scale
    and QCPR (warmth) as rated by person
    with dementia
   QoL-AD does not relate to ratings of QCPR
    (criticism) by person with dementia
    Quality of life of the person with dementia
    (QoL-AD rated by person with dementia)

   QCPR (warmth) rated by person with dementia
    is the best predictor of QoL-AD
        (accounts for 14% of variance, p=0.002)
   Age, gender, MMSE, dementia severity (CDR),
    depression (Cornell), anxiety (RAID), Relative’s
    Stress Scale and carer depression (GDS) do not
    significantly add to the prediction
   Previous studies (e.g. Thorgrimsen et al., 2003)
    suggest depression is main identifiable factor in
    predicting QoL-AD
             Relative’s Stress Scale
   Strong negative associations with:
       Person with dementia Positive affect index
       Carer’s Positive affect index
       Person with dementia QCPR warmth
       Carer QCPR warmth subscale
       Carer QCPR absence of criticism scale
   Care-giving occurs in the context of (often) a
    long-standing relationship
   Many people with dementia are able to reliably
    and accurately rate the quality of the current
   The quality of the relationship may be observed
    through observation of structured tasks
   The quality of life of the person with dementia
    and the stress experienced by the carer are
    associated with the quality of the current
   The differences in perception may be
    attributable in part to carer stress
        Personhood in relationship
   “Personhood is a standing or status that is
    bestowed upon one human being, by
    others, in the context of relationship and
    social being.” (Kitwood, 1997)
   High profile examples:
       Malcolm & Barbara Poynton
       Iris Murdoch & John Bayley
“Dr A’s rewards and
compensations, even the
most unexpected ones, are
concerned with being alive;
finding out not only how
much there is in being alive,
but what surprising new
things there turn out to be;
freedoms, and pleasures in
constraint, which we would
never have imagined or
thought of, never even have
considered possible.”
         Lesson 4

Those who provide care must be
         The impact on families
   Family care is major source of support for
    people with dementia – spouses and adult
   Around 25% of family carers experience high
    levels of distress
   Associated with reduced life expectancy in carers
   Challenging behaviour is major contributor to
    carer stress, and breakdown of care at home
   Carer health may also lead to crisis admissions
   Effective interventions to support care-givers are
The strongest evidence is for individualised
intervention packages for family caregivers
which can improve the well-being of
caregivers and help delay admissions to
care homes.
        Care homes and dementia
   3.2% of over 65s in Conwy supported in care
    homes (2004-5) (2.8% across Wales)
   Estimates suggest that 37% of people with
    dementia live in care homes
       27% of 65-74’s
       61% of over 90s
   As many as 75% of care home residents have
    dementia (not reflected in proportion of places
    registered – approx. one third)
   Nationally, difficulties in staffing are reported
        Approaches to Dementia
         Questionnaire (ADQ)
   Attitudes to dementia scale – Lintern & Woods (2000)

   19 statements about people with dementia, each rated
    on 5-point scale: ‘Strongly disagree’ to ‘Strongly agree’

   Developed on sample of 124 staff in care homes

   Factor Analysis identified two components
       Hope
       Recognition of Personhood
Hope - sample items: Hopeful staff
         disagree with:
   Unable to make decisions for themselves
   Very much like children
   Nothing can be done except keep them
    clean & tidy
   There is no hope for people with
   They are sick and need to be looked after
    Recognition of personhood -
          sample items
   Important to respond with empathy /
   Need to feel respected just like anybody
   Important to care for psychological and
    physical needs
   Spending time with them can be very
    Staff quality of life and well-being

   Many factors contribute to these aspects
   Levels of distress and burn-out amongst staff
    are relatively low
   Zimmerman et al (2005) Gerontologist Special
    Issue 96-105:
       154 direct care staff in 41 facilities
       Person-centred attitudes (ADQ) related to job
        satisfaction (especially with patient contact)
       Staff who perceive themselves to be better trained in
        dementia care report more person-centred attitudes
        and more job satisfaction
    Do staff attitudes relate to quality
     of life of person with dementia?
   Large study in USA reported by
    Zimmerman et al., 2005 (Gerontologist)
   421 residents in 45 residential care /
    assisted living facilities & nursing homes
   ‘From the resident’s perspective, quality of
    life was higher for those in
    facilities…whose care providers felt more
 Do staff attitudes relate to quality
of life of person with dementia? - 2
   Hope (from ADQ) related to two resident self-
    report QoL measures and to DCM observations
    of well-being.
   Total ADQ score and Person-centred attitudes
    also related to staff reports of the person with
    dementia’s QoL.
   Encouragement of activities and amount of
    verbal communication with staff and family
    involvement also related to QoL and/or well-
        The importance of positive
          attitudes and hope…
   Positive attitudes are associated with higher
    quality of care and higher quality of life for
    people with dementia
   Positive attitudes are also associated with higher
    job satisfaction
   Hopefulness regarding dementia an important
    component of staff attitudes related to quality
   Positive attitudes are improved by training (but
    training is not enough!)
   Staff need person-centred approach too!
     Lesson 5

Hope makes a difference
        Psychosocial interventions

   A number of interventions now have a
    good evidence base e.g.
       Cognitive stimulation
       Reminiscence groups
       Life review / life story books
       Cognitive rehabilitation
       Creative approaches
      Cognitive function and QoL

   Cognitive Stimulation
    Therapy (CST) – evidence-
    based intervention – small
    groups – 14 sessions
   Evaluated in large
    randomised controlled trial
    (Spector et al., 2003)
               Treatment and Control Groups -
              differences between baseline and
                 follow up: Cognition (n=201)

         2       MMSE              p=0.01

                 p=0.04                      treatment

                 Treatment and Control Groups -
                differences between baseline and
                follow up: Quality of Life (n=201)


         0.5                                   treatment
           0                                   control
         -0.5          p=0.03 1
    Cognitive rehabilitation for people
       in early stages of dementia
   The development of the intervention
       Single-case studies (Clare, 1999; 2000; 2001)
       Manual – 8 individual sessions
   Examples of personal rehabilitation goals
       Using a notebook or diary to keep track of events
       Keeping track of spectacles or keys
       Managing medication
       Making and using a memory book
       Taking up writing again
       Remembering names of partners at bridge club
       Learning to use a mobile phone
Cognitive rehabilitation for people in
     early stages of dementia
(Clare, Woods, Linden et al: American Journal of Geriatric
                    Psychiatry 2010)
     3-arm single-blind RCT for people in early-stage Alzheimer’s
      (MMSE 18+), stable on donepezil
     Cognitive Rehabilitation v relaxation v usual treatment
     Funded by Alzheimer’s Society
     recruited from Memory Clinics in North Wales
     Primary outcome Canadian Occupational Performance Measure
      (COPM) – goal performance and satisfaction
     fMRI data for a sub-sample on an associative learning (face-
      name) task
     Participants: 69 people (41 female, 28 male; mean age 77.78, sd
      6.32, range 56 – 89) with a diagnosis of Alzheimer’s or mixed
      Alzheimer’s and vascular dementia
Goal performance and satisfaction
CogRehab improves significantly v relaxation and control
   groups (p<0.001); 96% of goals set by CogRehab
         participants fully or partially achieved




                                                     CogRehab (22)
                                                     Relaxation (24)
                                                     Control (20)



    Baseline    Post      Baseline     Post

     COPM - Performance        COPM - Satisfaction
   Pragmatic randomised controlled trial of
    joint reminiscence groups for people with
    dementia and their family carers
   Primary outcomes:
       Person with dementia – quality of life
       Care-giver – psychological distress
   Cost-effectiveness study, funded by NIHR HTA
   42 month study, commenced December 1st 2007
   Follows treatment manual developed in trial platform
    (Schweitzer & Bruce, 2008)
   488 people with dementia and carers recruited
   8 centres ran 3-4 groups of 8 – 12 dyads
   Control – treatment as usual
          Lesson 6

Our life story shapes the present
          and the future
 Life review and people with
   dementia (Morgan & Woods, 2010)
 Randomised controlled trial
 17 people with mild or moderate dementia
  (average age 83)
 Admitted to residential / nursing home care in
  last 18 months (average 8 months)
 Intervention group took part in life-review using
  Haight’s Life Review Experiencing Form
   chronological
   evaluative
      Life review and people with
   Around 12 sessions per resident
   Life story book created for each resident
   Resident had editorial control
   Input sought from person’s family
   Control group - no additional input
   Measures included
     Geriatric Depression Scale (15 item version)
     Autobiographical Memory Interview
        Life review and people with

   Initial depression levels high
   Depression improves especially in post-
    treatment period
   Autobiographical memory improves,
    especially during treatment - maintained
    at follow-up
   This work demands clinical skills and
The impact of life review - John
 “Yes, I have remembered a lot more
  today, but that’s because the book sets
  things off in my head, it helps me
  remember all sorts of things and reminds
  me of things I have forgotten”
   ‘John’ at follow-up (age 83 - moderate
    dementia) GDS fell from 11 to 6
   The impact of life review -
           Sian (2)

 Follow-up: “Everyone who has seen the
  book loves it! People keep coming to my
  room to see it. My son thinks it’s
  wonderful - he wants to keep it after I die
  - he’s really proud of me and what I’ve
  done with my life. I’ll have to keep an eye
  on it, in case someone takes it.”
   ‘Sian’ - age 79, mild dementia; initial GDS - 9;
    final GDS 3.
 Summary – what can we learn?
1.   I’m still a person
2.   I’m still living – quality of life is possible in
3.   The importance of relationships
4.   Those who provide care must be valued
5.   Hope makes a difference
6.   Our life story shapes the present and the
7.   Dignity must be maintained
             Battlers and Warriors
         We are the broken and damaged,
      but with the help of the great fraternity,
 the fraternity of the warriors of the blue elephant
            and the battlers from Llandygai
  We may not fly like eagles but we will keep our
        When the great Amen has sounded,
            we will have kept our dignity
            When the knell has sounded,
            we will have kept our dignity.

John Barclay. October 18th 2005
   DSDC and Dementia Research teams at Bangor
    University, UCL, Hull, Manchester, Bradford
   Professor Linda Clare
   DSDC Training Officer – Joan Woods
   Our funders: WAG NISCHR, NIHR, HTA, MRC,
    ESRC etc.
   Memory clinics, care homes and other services
    in North Wales and across UK
   Above all, all those people with dementia and
    their carers who have contributed so much

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