Family Carer Perspectives of Quality End of Life Care for Dementia

1
Family Carer Perspectives of Quality End of Life
Care for Dementia
Nathan Davies1, Greta Rait1 and Steve Iliffe1
1UCL, Research Department of Primary Care and
Population Health, Royal Free Campus, Rowland
Hill St., London, NW3 2PF

• Background
• There are 670,000 family carers of people with
  dementia in the UK (1), they are experts through
  experience, often spending 24 hours a day with
  the person with dementia and having spent either
  lifetimes together through marriage or ears being
  brought up by them as children. They often know
  their wishes, like and dislikes incredibly well
  and are able to reflect this in their end of life
  care.
• The majority of research which has looked at
  family carers in dementia has focussed its
  efforts on
• Early stages and diagnosis
• Transition stages
• stresses and burden of caregiving
• Feelings of guilt or bereavement (2,3)
• We know very little about the experiences of
  caring for someone with dementia at the end of
  life (4).
• Aim
• This study aims to explore what are the features
  of good quality end of life care someone with
  dementia from the perspective of family
  caregivers.

• Method
• Design
• Qualitative methodology using in-depth interviews
• Participants
• Family carers of people who are currently dying
  with dementia
• Bereaved family carers of someone with dementia
• Procedure
• Participants were purposively sampled through
  Dementia UK a national charity which organises a
  register of carers who are willing to participate
  in research.
• A topic guide was developed from literature
  reviews of the field, it was then tested and
  changed iteratively throughout the interviewing
  process.
• Face to face interviews were conducted however
  telephone interviews were conducted when
  requested by participants.
• Interviews were transcribed verbatim and a
  mixture of thematic and narrative analysis will
  continue to be completed on the data.

Results
After death care watched them undertakers
carrying her down the stairs, you know in sort of
a black body bag and that was, that was horrible.
I felt really, as if at that point we maybe
shouldn't have been there, we maybe should have
been sat in the lounge I mean because she was
vertical at one point, because they were
negotiating bends in the stairs we could have
been alleviated from that (Daughter)
Communication he (Dad) would say to me you
killed your mother you bch you are a cursed
child you should have been killed the day you
were born and I was thinking I dont get this
guy, and at this point I had still been told
nothing about the illness (Daughter)
Communication on calling the GP after her Dad
had died the GP said to me what the hell have
you done to your Dad (Daughter)
Personalisation of care there was a caretaker
there who was just a lovely guy, and um because
my dad was quite sprightly, very, very physically
fit, um he was really good with my dad, and he
said, Come on Jack, were going to BQ, and
hed take my dad along to BQ. My dad thought
that he was working there. He was always
grumbling about not getting paid (Daughter)
Dignity For me to do that to my Dad personal
care I was cursing him it was very grave
situation
Quality of care
Compassion I asked them hospital staff not to
put him next to the electrical box, but they
ignored this, and put him there anyway. He
thought the coloured tags attached to his cannula
were the keys to open the electrical box so he
pulled out his cannula, making his arm bleed
copiously. There was blood all over the pillow,
but the nurse just turned the pillow over. The
nurse said that my father was nothing but a
problem (Daughter)
Fear An auxiliary nurse came back in and told
him to sit the f down. I saw this when I was
there, which made me only wonder what happened
when I wasnt there. No matter what anyone says
you cannot say anything to the nurses because you
are leaving your loved one at their mercy
(Daughter)

• Conclusions
• Quality is not hard to achieve in many situations
  its taking care back to its basics and
  respecting the person with dementia right through
  to the end of their life
• There is a large spectrum about what quality of
  care actually means to carers, quality of care is
  personal and individual, it means different
  things to different people. What one judges to be
  good quality care is not what another one does.
• Good end of life care doesnt mean saturating
  people with dementia with lots of treatment but
  it also doesnt mean giving up on them
• A patients care is not separate from a carers
  care they should be integrated to achieve high
  quality care

References (1) Alzheimers Society (2013).
Dementia 2013 infographic. From
http//www.alzheimers.org.uk/infographic.
Accessed 03 May 2013. (2) Peacock SC. The
experience of providing end-of-life care to a
relative with advanced dementia An integrative
literature review. Palliative supportive care.
201211(2)155-68. (3) Raymond M, Warner A,
Davies N, Manthorpe J, Ahmedzhai S, Iliffe S.
Palliative care services for people with dementia
A synthesis of the literature reporting the
views and experiences of professionals and family
carers. Dementia the international journal of
social studies. DOI 10.1177/1471301212450538.
Epub ahead of print August 10, 2012. (4) Sampson
EL, Burns A, Richards M. Improving end-of-life
care for people with dementia. Br J Psychiatry.
2011199(5)357-9.
If you would like further information please
contact Nathan Davies nathan.davies.10_at_ucl.ac.u
k
Funding source This research has received
funding from the European Union's European
Atomic Energy Community's Seventh Framework
Programme (FP7/2007-2013 FP7/2007-2011) under
grant agreement n258883 .