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
65-69
70-74
75-79
80-84
85-89
90-94
95+
0.1%
1.3%
2.9%
5.9%
12.2%
20.3%
28.6%
32.5%
Prevalence of dementia in older people
(UK Dementia Report, 2007)
35
30
25
20
Prevalence of
dementia (%)
15
10
5
0
6569
7074
7579
8084
8589
90- 95+
94
An older population
2.5
2
Millions
1.5
1971
1986
2006
1
0.5
0
80+
85+
North Wales


Number of people with dementia
projected to increase by 35% by the year
2021
(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
pop.
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
by 2021
380
2,382
2,793
7.81
2.45
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,
disorientation,
hallucinations
‘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


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



(N=201: alpha = 0.82)
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
worse?

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
rating
Relates to depression, not cognition

(Thorgrimsen et al., 2003)



Does QoL reflect lack of insight and
awareness?


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
relationship

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
relationship?
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
(GDS-15)
Interactions video-taped – puzzle and meal planning 10-15
minutes
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
2002)



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
affect
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
differences!
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
Relationships





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
relationship
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
relationship
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
valued
The impact on families






Family care is major source of support for people
with dementia – spouses and adult children
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
available
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
dementia
They are sick and need to be looked after
Recognition of personhood sample items




Important to respond with empathy /
understanding
Need to feel respected just like anybody
else
Important to care for psychological and
physical needs
Spending time with them can be very
enjoyable
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
hope’.
Do staff attitudes relate to quality
of life of person with dementia? - 2



Hope (from ADQ) related to two resident selfreport 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 wellbeing
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
care
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) – evidencebased 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)
change
3
2
1
0
-1
MMSE
p=0.04
ADAS
p=0.01
treatment
control
Treatment and Control Groups differences between baseline and
follow up: Quality of Life (n=201)
1.5
change
1
0.5
treatment
0
-0.5
control
p=0.03 1
-1
QOL
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 (facename) 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
7
6
5
4
CogRehab (22)
Relaxation (24)
3
Control (20)
2
1
0
Baseline
Post
COPM - Performance
Baseline
Post
COPM - Satisfaction
REMCARE


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
dementia






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
dementia




Initial depression levels high
Depression improves especially in posttreatment period
Autobiographical memory improves,
especially during treatment - maintained
at follow-up
This work demands clinical skills and
supervision
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.
2.
3.
4.
5.
6.
7.
I’m still a person
I’m still living – quality of life is possible in
dementia
The importance of relationships
Those who provide care must be valued
Hope makes a difference
Our life story shapes the present and the
future
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
dignity.
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
Acknowledgements
b.woods@bangor.ac.uk






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