Relationship-centred dementia care
Professor Bob Woods
Dementia Services Development Centre
Wales
Bangor University
b.woods@bangor.ac.uk
@dsdcwales
Welcome back!
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2011 – What can we learn from people
with dementia?
2012 – Dementia supportive communities
2013 – Making a difference through
research
2014 – Relationship-centred care
Aims of the DSDC
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To bring ‘care’ and ‘science’ together
To encourage evidence-based practice
that is driven by values
To raise the quality of care for people
living with dementia and raise their quality
of life and that of those who support them
A quick recap:
What is dementia?
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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
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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
Some good news!
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(Lancet, July 2013)
Compares prevalence
in the 1990’s with
2010’s
Shows reduced
prevalence in the
most ‘at risk’ age
groups
Lifestyle changes?
Remains major
challenge for health
and social care
An older older population
4
3.5
3
2.5
Millions 2
1.5
1
0.5
0
1985
1995
2005
2015
2025
80+
Why are relationships important
in dementia care - 1
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Care and support from family and friends
crucial for people living with dementia
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Varies at different points in the journey
Different for different people, different
relationships
Family care-givers at increased risk of stress,
depression, anxiety
Spouse carers who experience care-giving as
stressful have increased mortality
Why are relationships important
in dementia care - 2
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For paid staff providing support and
personal care key qualities include
humanity, warmth, empathy
Paid staff need to be able to ‘relate’ to the
people for whom they provide support
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Q: How does relationship-centred care
differ from person-centred care?
A: It fits well with Kitwood’s conception of
person-centred care, and is a natural
development of it
Kitwood’s person-centred theory
Person with
dementia
v.
Person with dementia
Person-centred care: 4 main
elements (Brooker, 2004)
 Valuing people with dementia and those who
care for them (V)
 Treating people as individuals (I)
 Looking at the world from the perspective of the
person with dementia (P)
 A positive social environment in which the
person living with dementia can experience
relative well-being (S)
 PCC = V + I + P + S
Personhood in relationship
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Not about the person’s capabilities
Not about our ability to ‘overlook’
impairments
“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)
“I-it” vs. “I-thou” relating
(cf. Martin Buber)
Personhood product of the care-giving
relationship
“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.”
Personhood in dementia
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“In dementia many aspects of the psyche that
had, for a long time, been individual and ‘internal’,
are again made over to the interpersonal milieu.
Memory may have faded, but something of the
past is known; identity remains intact, because
others hold it in place; thoughts may have
disappeared, but there are still interpersonal
processes; feelings are expressed and meet a
validating response; and if there is a spirituality, it
will most likely be of the kind that Buber describes,
where the divine is encountered in the depth of Ithou relating.”
(Kitwood, 1997 pp. 69)
Relationship-centred care:
the dementia care triangle
The person with dementia
Paid care-giver
Family care-giver
Quality of life and quality of
relationship
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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)
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Most often based on caregiver report or on
caregiver perspective (e.g. expressed emotion
evaluated from critical comments during interview
about the person with dementia)
Could person with dementia also rate the
relationship?
Can some aspects of relationship be observed?
Can people with dementia rate the
quality of the relationship?
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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
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Several brief relationship questionnaires were tested
People with dementia were able to complete these
consistently and reliably
Positive Affect (PA) Index (Bengston, 1973)
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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)
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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?
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Good agreement on warmth and positive
affect
Less agreement on criticism
Carers rate the relationship less positively
Different perspectives?
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What predicts difference in scores
between person with dementia and carer:
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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
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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)
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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)
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QCPR (warmth) rated by person with dementia
is the best predictor of QoL-AD
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(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
Family carers’ stress and quality
of relationship (Relative’s Stress Scale)
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Higher stress associated with lower quality of
relationship:
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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
Cause or effect?
Relationships
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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
How does ‘awareness’ influence the
person’s ratings of quality of life?
Awareness and quality of life
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MIDAS study – 100 people with early-stage
dementia living in North Wales
Interviewed three times over two years
QoL-AD predicted by male gender, low
depression, quality of relationship, strong
sense of self and low irritability.
Discrepancy of person’s and carer’s ratings of
functional level made a small difference to
ratings
Not related to cognitive impairment
Negative attributions and criticism from family care-givers
are associated with raised stress levels in care-givers and
reduced quality of life
I get him all ready to go to the
day-care centre, looking clean
and smart – I turn my back for
5 minutes, and he has taken his
trousers off. I despair
sometimes.
She does it just to
annoy me – she
could remember if
she wanted to!
I tell him ‘your mother has been
dead for 20 years’, but he won’t
listen – he always was stubborn,
always had to be right….
Cognitive-behavioural family
intervention (reduce criticism)
(Marriott et al, 2000)
Family counselling and peer support –
the New York spouse study
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Mittelman et al 1995; 2004 etc.: family
counselling and peer support; 406 spouse caregivers randomised controlled trial
Initial 6 sessions of individual and family
counselling followed by availability of counsellor
by telephone for duration of study
All participants commit to attending peer support
groups
Carers in control group could also access
counsellors
Family counselling and peer support –
the New York spouse study - 2
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(Mittelman et al., 2006)
Reduced depression in carers, reduced rates of
institutionalisation
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Long-term effects – depression rates lower 3 years
later
Long-term follow-up (up to 17 years); difference in
median time to placement between intervention &
control groups is 557 days (Mittelman et al., 2006)
Higher levels of satisfaction with social support
network over 5 year period (Drentea et al., 2006)
Changes in attributions about difficult behaviour
(Mittelman et al., 2004)
Family counselling and peer
support – the New York study - 3
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Increased time to placement accounted for by:
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Increased satisfaction with social support
Reduced difficulty with behaviour problems
Reduced depression
The benefits of the intervention persist in the
period when the person with dementia is admitted
to a nursing home; burden and depression less for
carers in the intervention group following the
admission, compared with carers in the control
group (Gaugler et al 2007)
Relationship-centred care:
the dementia care triangle
The person with dementia
Paid care-giver
Family care-giver
The evidence-base
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Literature review
Study in North Wales (led
by Diane Seddon) – 78
family members
interviewed soon after
relative admitted to a
home – 29 interviewed
again 10 months later
European study (Woods,
Keady et al.) – 60 staff
and 100 carers – focus
groups, interviews,
questionnaires etc.
Partners in care?
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Staff: Relatives are more trouble than the
residents?
Relatives: The staff are always changing
and they don’t have time to talk – they
never tell us what is happening.
Stress for care-givers may continue
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‘The careers of caregivers do not stop at
the institution’s door, but continue in an
altered and still stressful way. Caregivers
do not give up their role: they shift their
responsibilities.’ Zarit & Whitlatch (1993, p.35)
The extent of distress in relatives
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A third of relatives visiting ‘frail older person’
living in a care home report significant
psychological distress (especially spouses) (Buck et
al., 1997)
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Survey of members of Relatives’ Association
(1996) (153 respondents)
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52% anxiety level above normal range
41% depression levels above normal range
81% sometimes feel have let the person down
73% sometimes feel trapped by the responsibility
67% feel guilty about placing the person in a care
home
Guilt feelings
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‘I felt guilty at first, very guilty, leaving her
there…It’s got worse as time’s gone by
and it’s like I’m stuck in this downward
spiral of guilt and self-blame’
‘I feel guiltier now than I did the day she
went there…I’ve more time to think about
it..’
(10 months after admission; Woods, Keady &
Seddon, 2007, p. 36)
Does the home contribute to
relatives’ distress?
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For families ‘degree of strain could be predicted
from….their interaction with the nursing home’
(Almberg et al., 2000)
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Not the only factor (Whitlatch et al, 2001), but a
significant one – the changing relationship with
person with dementia also important
Circumstances of the admission also important –
crisis admissions more difficult to adjust to
Relatives’ views of the home
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83% generally happy with the way person
is cared for (Relatives’ Association survey)
BUT
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69% feel there are insufficient activities
26% would like to participate more in daily
care
29% feel staff don’t pay enough attention to
opinions of family
38% feel more contact is needed with staff
USA study - >25% family members want
more involvement; 4.3% want less (Port et
al., 2005)
Relationships between relatives and
staff
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Positive relationships – mutual respect, regular
communication and consultation, concern for the relative
as an individual
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‘Very amicable. We all get on well. It’s like going to see friends.
They always want to know how I am getting on’
Problematic relationships – ambiguity over roles and
responsibilities, poor channels of communication
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‘When my husband first went in, I was told that I was interfering
too much. We still have angry words about this.’
‘They do things and I’m left reeling, thinking how nice it
would’ve been if they’d asked me.’
(Woods, Keady & Seddon, 2007, p. 39)
Benefits of family involvement
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Relatives who help with areas such as going out
and taking part in activities report retaining a
closer, more intimate relationship with the
person with dementia (Gaugler et al., 2004)
Large study in USA reported by Zimmerman et
al., 2005 (Gerontologist)
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421 residents in 45 residential care / assisted living
facilities & nursing homes
Family involvement related to Quality of Life and/or
well-being of the person with dementia
Staff perspectives
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Positive perceptions:
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A resource for staff as well as for person with
dementia
Can show welcome appreciation
Important source of information, so care can be
personalised
Negative perceptions
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Disrupt routines, an added burden
Over-critical, always complaining, a source of burnout
Some don’t visit enough
If not well, take it out on staff
Relationship-centred care
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Maintaining and supporting relationships
between person with dementia and family
members
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Do relatives feel welcome?
Do they feel able to continue to include the
person with dementia in family activities?
Do they feel their visits have a meaning and a
purpose?
Can they find support when distressed?
Key areas of family involvement
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Monitoring the care provided
Advocacy and decision making for the
person with dementia
Providing care, outside the home or within
it, contributing to personalised care
Intervention and training programmes
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Need to involve staff and families
USA – Partners in Caregiving program
(Pillemer et al., 1998) – improved
communication
Sweden / UK – Partners in Care
(Jessica Kingsley, 2008 DVD +
Booklet) – 4 sessions
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Sharing information
Sharing the care
Developing supportive relationships
Making it work
Lundh et al. (2003) – improved
communication, greater sense of
partnership and community, greater
clarity about roles and joint working
Not like this…
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‘I would say something about how he
used to like something at home, and they
would contradict me. It was as if the five
years of my looking after him didn’t really
count…but it was as if ‘Oh, we’re the
professionals, we know what we’re doing’.
It’s not impossible…
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‘The owner of the home my mum was in
was super. If he ever saw you looking
slightly upset, straight away he was
always there, arm round your shoulder,
and ‘come and have a cup of tea with me
and a chat’…very, very good like that. And
of course you get very friendly with some
of the regular staff…they were very
supportive.’
Improving relationship quality –
intervention studies (1)
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REMCARE study (Woods et al., 2012) – joint
reminiscence groups for people with dementia and
family carers
488 dyads took part
12 weekly group sessions and monthly sessions
for 7 months
People with dementia who attended more sessions
at 10 months reported improved quality of life and
improved quality of relationship (warmth) – carers
reported more stress
Improving relationship quality –
intervention studies (2)
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Individual cognitive stimulation
Family care-givers trained to provide sessions
two or three times a week for 6 months
Provided with manual, workbooks and
telephone support
365 dyads took part
Relationship rated by person with dementia
improved?
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iCST manual
Published November
2014
iCST trial – Orrell et
al.
Funded by NIHR HTA
Improving relationship quality –
intervention studies (3)
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Life story books for people with dementia
living in care homes (Subramaniam &
Woods, 2014)
Quality of relationship rated by family
member improved after person had Life
Story Book for 6 weeks
Made visiting easier, more to talk about ,
triggered other memories…
Relatives’ comments after Life Story Book
Quality Time
- Helped me to spend good ½ hour with____.
Very productive and not like before.
-At least for ½ hour my brother is happy
Positive feelings and Pleasure
- I’m glad that I helped ____ to leave her
legacy
-Pleasure in seeing photos of mum’s life;
obviously it covers some of my life too.
Thank you!
@dsdcwales
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Thanks to colleagues and collaborators:
The DSDC Wales team
The NISCHR team
Joan Woods, Training Officer, DSDC
Professor Linda Clare – Bangor University
Professor Martin Orrell – UCL
NIHR HTA programme '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.'