The role of dementia research and how it is borne out in reality can be
a contentious issue, with some experts believing that it does little to benefit
people currently living with dementia. But participating in projects can
actually enhance the wellbeing of care home residents.
Professor Mary Marshall, a senior consultant with HammondCare, writes
and lectures in dementia care and is dubious of exactly how effective dementia
research is at present.
Expressing the issues she has around the topic at the UK Dementia
Congress in November, she told congress attendees that she is “a bit depressed
about it,” adding: “I’ve become really unhappy about the rhetoric of
evidence-based and the reality of expediency.
“There’s got to be more than research, there’s got to be a campaign or
something as well.”
Yet there are ongoing partnerships between care homes and academic
institutions where those affected by dementia are directly involved in research
and contribute by providing first-hand evidence and experiences.
These partnerships provide a wealth of benefits for residents and care
teams alike. Getting involved in research can provide additional stimulation
for residents as they take part in new activities and talk to new people.
It also gives residents a sense of purpose and self-worth, helping them
to feel like they are contributing to their future as well as the next
generation, while staff gain additional training and an increase in job
satisfaction, thereby creating an encouraging atmosphere of excellence and
improvement.
‘Their experiences are what really matters’
The University of Worcester’s Association of Dementia Studies (ADS)
carries out research to improve the lives of those with dementia by involving
people with dementia, care workers and families directly in their projects.
Isabelle Latham, a PhD student and senior lecturer at ADS, explained:
“Their experiences are what really matters when we wish to discover what
affects people’s experiences, quality of life and care in care settings.”
Despite complex and in-depth ethical processes, ADS makes every effort
to involve people living with advanced dementia, particularly if they are
unable to be involved in more conventional research projects.
Ms Latham added: “We do this because it is important that their
perspective is also considered in any findings.
“[Previous projects] have used observations of people’s daily lives and
care experience to try and capture their point of view even though a person may
have limited verbal communication.”
‘Outsiders’ help care home staff reflect better
While contributing to research, care home staff reap the benefits of
participating in often ground-breaking projects, allowing them to provide
better care for residents living with dementia.
Ms Latham said: “In our experience, care homes, staff, families and
people living in care homes are very positive about the impact of taking part
in research, reflecting that it can feel empowering to be able to share
experiences and opinions with others and know it may make a difference in the
future.
“They often report that it increases their reflective abilities about
the care they provide and that having ‘outside’ researchers coming into the
home or discussing an aspect of care can help them think about changes they can
make.”
Care homes, researchers and families can find information about ongoing
and upcoming projects via Enabling Research In Care Homes (ENRICH), a National
Institute for Health Research (NIHR) toolkit which provides information and
networks for those involved or who wish to be involved in research.
The Orders of St John Care Trust (OSJCT) has been part of the ENRICH
Research Ready Care Homes Network for three years. The network brings together
care home staff, residents and researchers to facilitate the design and
delivery of research, with the hope of improving the quality of life for
residents.
Victoria Elliot, principal care consultant for OSJCT, said the group
became part of the network because they are passionate about research and
helping their residents and thought it would be a “positive experience” for
them.
While the research they are involved in doesn’t always directly impact
residents’ lives, it certainly enhances their general well-being.
‘For the greater good’
Ms Elliot explained: “They feel like they’re helping someone else,
future generations, and it gives them a sense of purpose.
“They know that they’re doing some good that will benefit people in the
future. They’re doing it for the greater good.”
She also noted that participating in research projects helps to
counteract negative press that the social care sector often receives by improving
staff morale.
She added: “They’re proud of the work they do and being involved in the
research helps to reinforce this pride.”
Anna Hicks, a roaming home manager for OSJCT, took part in a five-year
programme, WHELD (Improving Wellbeing for Health for People with Dementia),
which assessed the most effective therapies to reduce the prescription of
antipsychotic drugs and improve mental health and quality of life for people
with dementia.
Taking part in this research not only benefitted staff and residents,
but also inspired her to initiate new projects and innovations in the home to
help those living with dementia.
She told ENRICH: “It was so successful that I started a dementia café, a
knock-on benefit from the project. I also developed a ‘getting to know you’
process where every single member of staff now spends 10 to 15 minutes, once a
week with a different resident – that includes the cooks, domestics and me.
“I felt my staff got a lot out of it – because now they understand much
more about dementia and look at residents’ reactions in a different light.”
‘As academics, keep shouting’
Despite the positive outcomes for care homes collaborating with academic
institutions, there remains the issue of disseminating findings and spreading
awareness of the results to other care homes which have not participated in
research.
This is an important issue at the Association for Dementia Studies
because they “aim to make a difference to the lives of people living with
dementia and their carers.”
Ms Latham explained: “We ensure that our research reports are available
to the public via our website, we run free events to share the findings from
our different projects and we integrate our latest evidence from research into
the teaching and education programmes we offer.
“However, care homes, their staff and visitors are very busy and as
such, I think we always need to work hard to make sure research findings are
easy and simple to find out about and apply to practice.”
Dave Bell, an Admiral Nurse who works for Admiral Nursing Direct, the
national dementia helpline, highlighted the importance of spreading awareness
of dementia research.
He said: “People do want to be involved in research. We get questions:
‘How can I get into a drugs trial?’ or something like that.
“Evidence-based for us as nurses is really important but it often gets
presented at conferences and we say ‘oh that’s interesting’ and then we carry
on doing what we’re doing.
“So keep shouting, as academics, keep shouting because it’s really
important to get through to us as nurses and other practitioners.”
SOURCE: carehome.co.uk, Charley Walker
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