Division of Clinical Psychology
Conference 2012
Paper Presentation: Carers of
Older People with Dementia
By Dr Jonathan Hutchins, Clinical
Psychologist
Abstract
•
Introduction: This paper is a report of a study that examined how carers of
people with dementia cope.
•
Methods: Used a purposive sampling method to access 13 carer givers of
older people with dementia and interviewed using a semi structured
interview
•
Results: A thematic analysis was done on the data and three core themes
became evident during the analysis: how they feel, what they do and what
they think about the person they care for and their situation.
•
Conclusions: Care givers highlighted methods of coping in terms of
focusing on the here and now as well as areas of service improvement in
terms of requesting more respite care and more home visits from local
services.
•
Clinical Implications: Helping carers to get a routine, to focus on the here
and now and to help them to concentrate on what they have agency over
may help them cope better with there experiences.
Introduction
• The National Dementia Strategy highlights that
with the ageing population there will be up to 1.4
million people living with Dementia in the UK by
2038 (Department of Health, 2009).
• Currently two thirds of people with dementia live
at home with carer relatives (Department of
Health, 2009).
• Need to know what helps carers cope from a
service perspective.
Introduction (2)
• Literature review at the time of the study
(2007) revealed a gap in that there were
relatively few qualitative research studies
investigating how carers cope with a
relative with dementia.
• Research question: How do carers of a
relative with dementia cope?
Method
• Design: Qualitative design focused on specific
experiences of carer’s of people with dementia.
– Used semi structured interview with
participants focused on their lived
experiences of caring and how they coped on
a day to day basis.
• Sample: Purposive sampling method found 13
participants through local Older Peoples
Community Mental Health Team in the NHS.
– Inclusion criteria were that they had to be a carer
living with a person with a diagnosis of dementia.
Method (2)
• Participant demographics: Of the 13 participants that
took part in the study 2 were male (15%) and 11 were
female (85%). 2 (15%) participants were between the
ages of 30 to 60, 4 participants (31%) were between the
ages of 60 to 70, 4 (31%) were between the ages of 70
to 80 and 3 (23%) were between the ages of 80 to 100.
• All participants were white British (100%)
• Data Collection: Participants were contacted and when
informed consent was given they were interviewed at
their homes by the author. The data was collected
between May 2006 and January 2007.
• Ethics: Ethical approval was sought and obtained from
the local NHS trust the author was working within.
Results
• Completed three stages of thematic analysis and came
up with three core concepts from interview transcripts.
• The original research question was seeking to discover:
“How do carers of a relative with dementia cope ?”
• Therefore, the core concepts are related to what the
carer does in response to the stressful situation they are
in. The core concepts are as follows:
1. How they feel
2. What they do
3. What they think, or how they perceive the person they
care for and there situation.
Results Core Concept 1: How carers felt
• Sadness: relation to themselves, in how things have changed, or the
care recipient’s situation: “I was given a book about carers and
found it depressing – I haven’t finished reading it yet” , “Its
very sad as he can’t read anymore”, “I just get depressed, its
never ending”. ‘There is no conversation with him; it does get
you down repeating everything”.
• Another prominent theme was anxiety and apprehension over the
future and about how things may change more: “I know I won’t be
able to cope if it gets worse”, ‘I worry as to how much worse it
will get’, “I’m frightened of what will come later”, “I don’t know
what is going to happen in the future”
• There were also some examples of where possibly carers felt
overwhelmed by their situation: “I haven’t found any of it
manageable”, “It’s incredibly difficult”, “My life has been
disrupted, really disrupted”.
Results Core Concept 2: What they did
• Social support: “The neighbours are very good, and will cheer
you up.’, ‘I have good friends over the road and can drop in and
see them anytime”.
– Carers’ Groups – only 1 out of 13 carers considered this.
• Family support and shared family activities: “My daughter has
been wonderful – all I’ve got”, “Family are very good – the girls
phone up every day – they will often look in.”
• Hobbies/Interests: “I like gardening – its very therapeutic”, “We
both do gardening and the allotment and grow vegetables”.
• Activities of daily living and routine: “I take the dog for a walk three
times a day”, “I like to get out everyday somewhere – don’t like
sitting in doors”.
Results Core Concept 3: What they think
• There were examples in the discourse where
carers were coping well emotionally in response
to their situation and the care recipient: “I never
experienced anything like it before but I’m
coping”, “I’m fairly optimistic”.
• Other aspects to carers’ thinking were
highlighted in terms of them being concerned
over the future, and how some carers may have
managed this: “I live day to day – I don’t think
too deeply about future”, “I will cope as long
as I can”.
Discussion
• The core concept of what carers think supports the
findings of recent qualitative studies, in terms of carers
focusing on the here and now in order to prevent anxiety
when thinking about the future and the progression of
the dementia. (Quinn et al., 2008, Robinson, Clare,
Evans, 2005, Morano, 2003, Cooper et al., 2005).
• Carers said that they found social support from their
family, friends and neighbours to be very important. This
finding is similar to other research studies (Quinn et al.,
2008, Robinson, Clare, Evans, 2005, Grazyna, Zygfryd
2003).
– These findings could also support clinical
recommendations from other research that
intervention in the family of the care recipient could
reduce carer stress (Agnes et al., 2004).
Discussion (2)
• An interesting finding from this project was that only one
carer out of the 13 in the study attended a carers group
and most did not have any awareness or intention of
engaging in one. This may suggest that this type of
service provision is not as useful to carers in contrast to
some research suggesting that carer groups have high
effectiveness (Hoskins et al., 2005).
• Another interesting finding was how carers appeared to
experience a sense of agency or control over their lives
in relation to their hobbies and interests. Carers also
highlighted how they lived on a day to day basis and the
importance of having a daily routine which supports
other research findings (Perry, 2002).
Conclusions
• Findings highlighted a range of
individualised coping strategies that carers
used.
• Study highlighted that carers found it
useful to focus on the here and now and
on what they had agency over in terms of
there hobbies and routine.
– This finding may warrant future research as it
may be another way to support carers.
Clinical Implications and Take
Home Messages
1. Helping carers to focus on the here and
now and helping them to get a routine
may be helpful.
2. Helping carers to get more social support
from friends and family may also be
helpful.
3. Giving them the full range of information
about services, including respite care and
more home visits may also be helpful.
References
•
Agnes, M., Weber, K., Gargiulo, M., Canuto, A., Giardini, U.,
Giannakopoulos, P. (2004). Caregiver burden in dementia: Determinants
and interventions. Schweizer Archiv fur Neurologie und Psychiatrie. Vol
155(5), 217-224.
•
Cooper, C., Katona, C., Orrell, M., Livingston, G. (2005). Coping strategies
and anxiety in caregivers of people with Alzheimer’s disease: The LASERAD study. Journal of Affective Disorders, Vol 90 (1), 15-20.
•
Department of Health. (2009). Living well with dementia: A National
Dementia Strategy. Department of Health Publications.
•
Grazyna, A., Zygfryd, J. (2003). Strategies of coping with stress in
caregivers of patients with Alzheimer’s disease. Archives of Psychiatry and
Psychotherapy, Vol 5(4), 39-49.
•
Hoskins S., Coleman M., McNeely D. (2005). Stress in carers of individuals
with dementia and community mental health teams: An uncontrolled
evaluation study. Journal of Advanced Nursing, Vol 50(3), May 2005. pp.
325-333.
References (2)
• Morano, C.L. (2003). Appraisal and coping? Moderators or
mediatros of stress in Alzheimer’s disease caregivers?. Social Work
Research, Vol 27(2), 116-128.
• Perry, J. (2002). Wives giving care to husbands with Alzheimer’s
disease: A process of interpretative caring. Research in Nursing &
Health, 25, 307–316.
• Quinn, C., Clare, L., Pearce, A., van Dijkhuizen M. (2008). The
experience of providing care in the early stages of dementia: An
interpretative phenomenological analysis. Aging & Mental Health,
12, 769–778.
• Robinson, L., Clare, L., & Evans, K. (2005). Making sense of
dementia and adjusting to loss: Psychological reactions to a
diagnosis of dementia in couple. Aging & Mental Health, 9, 337–
334.