A joint article has been published between the ALLIANCE and the University of Glasgow, based on the letters Project Engagement Lead Tommy Whitelaw collected from carers across Scotland. These letters have been analysed by Jane Joy and Diane Willis from the University of Glasgow, with the results of their study now available:
1.
Introduction
Professors Jane Joy,
University Teacher, Nursing and Health Care and her colleague Diane Willis,
University Lecturer, Nursing and Health Care, at the University of Glasgow
performed an independent analysis of 417 letters from carers sharing their
experiences. The letters were gathered after Tommy
Whitelaw, now Dementia Carer Voices Project Lead, asked carers to share their
stories with a view to improving policy and practice.
The report below summaries
some of the key findings from the report.
2.
Findings
·
Many people reported becoming a carer through
chance by visiting a friend or relative, often someone that they hardly knew,
and performed took on a caring role as an interim measure believing that more
support would be put in place
·
A large proportion of the letters began with
‘my mother/father had just had a stroke, cancer, hip replacement, diabetes’,
highlighting that people are living with multiple conditions/comorbidities.
·
Carers have very little ‘downtime’ – many of
the letters were written very late at night/very early in the morning
·
The emotional energy of caring was a key
theme that carers described in their letters. Carers described their sense of
loss, many of whom are themselves in their 70s and 80s and have been married to
their partner for several decades:
o
‘‘I
am 80 years of age I am finding it tough and there is no one to share and help
me get through. I feel so low at times and LONLEY. I NEED a human listening ear
and also an understanding one.…we had a very happy marriage until my husband
took dementia and I HAVE LOST A MARRIAGE AND LOST MY HUSBAND’
[carer emphasis].
o
‘I
had our retirement all planned, the holidays etc., the future I saw for us is
no longer there after all my hard work.
My world collapsed around me’
·
Many carers are isolated and expressed their
feelings of loneliness, citing a lack of understanding and having no one to
talk to:
o
‘I
feel lonely and isolated. Sometimes I could cry with loneliness’
o
‘I
can’t go out after mum comes back from the daycentre. I am in every night... but lately I have had
a feeling of being imprisoned and without freedom.. caged. The phone rarely
rings and friends have moved on’
·
This isolation was often due to lack of
respite or time to socialise, with many echoing that caring is a full time
responsibility:
o
‘’I
have been spending 168 hrs a week in my caring role like so many other carers.’
This has led to an impact in
carers health and wellbeing, with a large proportion of carers fearing for the
future should they become ill:
o
‘She
developed dementia and was unsettled all day and night. My father had little or
no sleep and was unwell himself so I spent every day in their house giving him
a break. My health soon failed because
of all this and I found myself on anti-depressants’
o
‘Our
relationship has changed I do more for him.. I worry for the future what if I
get ill?’
·
Frustration was another theme that emerged
from the letters. Carers expressed frustration at their concerns not being
taken seriously, at the difficulty in obtaining a diagnosis and at the lack of
support. This was also identified by a number of carers in the Dementia Carer
Voices survey which captured the views of a further 160 carers.
o
‘The doctor didn't even take time to
review [him] and told me he was depressed because he was able to answer all of
the questions…… When he died his GP rang to ask if I was ok – I asked if he had
dementia [they replied] “yes of course he had vascular dementia” this was the
first time I was given an official diagnosis’
o
‘..his
behaviour deteriorated, but he was able to put on a front to other people so no
one believed me. He was entirely
convincing and I was [thought of as] stupid’
o
‘My
purpose in writing is to ensure that ......health care professionals do not
just tick the box but listen to families who know the person’
·
Many carers felt abandoned by health and
social care staff, and that their rights were not being respected:
o
‘Health service consultants, doctors,
nurses do not understand the stress of the carers physical, mental and
emotional feeling on top of which [we] have no medical training at all….the
only daily help I had at the age of nearly 80 was a carer visiting in the
morning.’
o
‘Patients rights means if he refuses he
does not have to participate.... This means I am left to toilet him.. The
safety assessment requires two.. But I am left to carry out tasks on my own ..
Where are my rights?’
·
Over and above and emotional and physical
strain, a caring role can cause severe financial strain, particularly with
carers who have had to give up work or reduce their hours at work, or who are
retired.
o ‘When
he went into a home and I had to live on my pension... I struggled for a year
before I found out I could take half his occupational pension for my own use’
o ‘I
got into serious financial debt because no one directed me to the attendance
allowance, community charge discount or carers allowance’
·
A further area of
concern was the discrepancies in the care provided:
o ‘It was very difficult looking after my
husband and myself as I am quite a small person and my husband was very
heavy.... I had to have day care four days as my health began to suffer... my husband fell down stairs.. I received some care from my local authority.. one
hour in the morning to shower and dress
my husband’
o ‘Respite
care was like a kennel for old people with nothing to do’
·
These responses are contrasted by
pockets of good practice:
o the
staff there were wonderful and put me in touch with day care providers
including Alzheimer Scotland. This took the pressure off me
o
‘A wonderful CPN and a local lady from crossroads came to
sit with my mum to give dad a break the good morning and good night ladies
(home helps) were also a great help.’
This identified that good
care was care that encompassed not only the person with dementia but also the
carer.
3.
Conclusion
The
concluding remarks of the report reinforced the same issues of being of key
concern to carers; namely the frustration at the lack of forthcoming
information, the discrepancies of care, the emotional, financial and physical
demand on carers and the gap between policy and practice.
“It was clear that
people with dementia and their carers were not able to engage with the system
effectively at present. Very often carers often had nowhere to go and no one to
turn to whilst essential equipment e.g. incontinent pads were difficult to
obtain. The burden of care impacted on their health and well-being as did
finances. Within this were pockets of good practice, which carers defined as
services that listened, acknowledged their experience and met their needs and
the person with dementia. At present despite the plethora of policy aimed at
increased awareness and support for people with dementia, there is a gap
between what support has filtered through and the general malaise these carers
felt. Services and policy makers need
ensure that there are opportunities for shared/joint activity including
innovative shared care/respite, support and counselling services for Carers
looking after people with Dementia and
better integrated information about dementia, benefits and support.”
About Dementia Carer Voices
Dementia Carer Voices seeks to:
- Highlight the importance of family
carers being enabled after diagnosis to build and sustain a network of
support, preventing crisis situations and feel enabled to ask for
additional help when it is needed;
- Capture the experiences of carers across
Scotland with a view to informing future policy and service provision;
- Raise awareness of the issues around
caring for someone with dementia including among health and social care
students;
- Empower carers by providing information
based on the Charter of Rights and Carer Strategy about caring for someone
with dementia;
- Highlight the role of Carers as natural
resources; Carers as people with needs; Carers as people with independent
lives;
- Work with other Carer Organisations and
key stakeholders within and beyond the ALLIANCE’s network to ensure that
relevant strategies are well informed by the views of service users.
- Harness the work undertaken to date by
the Tommy on Tour campaign, and support Tommy Whitelaw to undertake
further outreach work to carer organisations across Scotland.
About the ALLIANCE
The ALLIANCE has three core aims;
we seek to:
·
Ensure people are at the centre,
that their voices, expertise and rights drive policy and sit at the heart of
design, delivery and improvement of support and services.
·
Support transformational change,
towards approaches that work with individual and community assets, helping
people to stay well, supporting human rights, self management, co-production
and independent living.
·
Champion and support the third
sector as a vital strategic and delivery partner and foster better cross-sector
understanding and partnership.
