The term, ‘hard to reach groups’ is often heard in health and social care research conjuring up images of insurmountable barriers, and populations who are somehow tantalisingly inaccessible to the researcher. Yet, we have no difficulty in using terms such as person-centred, relation-centred or meaningful activities, recognising the importance of each when it comes to support needs and care planning with individuals.
So how do we match the person for whom we have very little evidence of their needs and preferences, with appropriate support that claims to address just that? Surely it is time to change the focus and acknowledge that ‘hard to reach’ groups are actually ‘under-researched’ and that, as researchers, we need to take some responsibility for this?
In 2016, I was part of the Dementia and Equalities group led by the NHS Health Scotland and Alzheimer Scotland. This focused on five particular population groups with characteristics protected by the Equality Act 2010, where a range of challenges might arise in the context of dementia:
- Age – younger onset dementia (under the age of 65 years)
- Race and ethnicity – black or minority ethnic (BME)
- Learning disabilities
- Lesbian, gay, bisexual and transgender (LGBT)
- Disability – sensory impairment
We know that such groups are under-represented in terms of the numbers of people diagnosed with dementia, and current services do not fit specific needs. Yet, without knowledge of the specific characteristics of such populations, the cycle of under representation will continue with a subsequent lack of evidence-based support in practice.
For example, we know that at least 1 in 3 people who have Down’s syndrome are estimated to have a type of dementia by the time they reach mid-50s. This leaves the potential for a period of ageing with increasing cognitive impairment whilst not ‘fitting’ into older persons or dementia care services which are typically for people aged over 65, or into learning disability services where the long-term focus in the UK is commendably on independence and self-determination.
Recent media coverage has focused on areas of dementia care that are becoming more evidence in care homes, day centres and hospitals across Scotland – sporting reminiscence, doll therapy, assistive technology or telecare are just a few examples. Whilst much evidence was originally anecdotal, research and evaluation have followed with a steadily growing evidence base for non-drug interventions. Even where we live with dementia has received attention – who knew fifteen years ago that colour contrast and the design of a room could be so important in supporting people with dementia to make sense of their environment? Yet this growing evidence of non-drug interventions has not included people with a learning disability and dementia.
My current research is a three-year project funded by the Alzheimer’s Society, one of two national implementation grants funded in the UK, and the only one in Scotland. Along with Dr Kate Mattheys, Research Fellow, and a team of co-researchers and advisors including people with a learning disability, we will conduct a participatory action research study in two cycles. The aim is to implement non-drug interventions with people who have a learning disability and dementia. The first cycle will include participants with a recent diagnosis of dementia, whilst cycle 2 will focus on people with advanced dementia.
Taking a collaborative approach and including co-researchers with a learning disability, we hope to challenge the notion of ‘hard to reach’ groups in research and instead demonstrate that participatory and inclusive research can open doors that are otherwise firmly shut for individuals who are typically not invited to take part.
Under-researched populations such as people with a learning disability and dementia are not hard to reach; it is up to us to enable and facilitate inclusion in research using appropriate, and where necessary, adapted research and communication methods. Without this, the cycle of under-representation will continue with a subsequent lack of evidence-based support in practice.
Dr Karen Watchman, Senior Lecturer in Ageing, Frailty and Dementia.
- Karen is Programme Director of the new online MSc Global Issues in Gerontology and Ageing due to launch on September 2017. One of the core modules: Health and Wellbeing of People with Dementia will include a focus on support for people with dementia in marginalised groups.
- Karen’s new book Intellectual Disability and Dementia: A Guide for Families was published on World Down Syndrome Day, 21 March 2017.
- For more information about learning disability and dementia please see Learning disabilities and dementia factsheet written by Karen Watchman and Andre Strydon (University College London) for the Alzheimer’s Society UK.
- Images show actors from a 2015 dissemination project, Jenny’s Diary, a resource to support conversations about dementia with people who have a learning disability, developed by Karen Watchman and colleagues with the support of an Alzheimer’s Society Dissemination Grant. Jenny’s Diary is also available in German, Mandarin Chinese, Italian and Norwegian.
Dr Karen Watchman has blogged for the Alzheimer Society:
“People with Down’s syndrome are at an increased risk of dementia. Dr Karen Watchman is a researcher, based at the University of Stirling, who specialises in understanding how to help people with learning disabilities to manage their dementia. For World Down’s Syndrome Day (March 21), Dr Watchman discusses myths around Down’s syndrome and how research can help people with both Down’s Syndrome and dementia.”
21 March 2017
Fiona Dobbie, Research Fellow in the Institute of Social Marketing has blogged in the Times Higher Education:
“I turned 40 this year, and rather than indulge in the clichéd symptoms of a mid-life crisis (getting a tattoo, having an affair, Botox) I am in my second year of a part-time PhD.
“It’s not that my life isn’t fulfilling or challenging enough. I am typical of my age: happily married with an energetic 6-year-old, fortunate to have friends and family and a full-time job as a university research fellow. So why am I doing a part-time PhD?”
Click here for the full article, published 12 March 2017.
Carrie Milligan graduated from the University of Stirling in November 2016 with a Masters in Advanced Practice. Her dissertation was a Quality Improvement Project and focused within her work place.
She was awarded a Research-Based Learning Prize for her dissertation titled: Maintaining the functional ability and quality of life of patients leaving hospital: improving information sharing with care home staff on discharge from an organic assessment ward.
We found out about Carrie and her work:
Tell us about your project:
I am a Specialist Occupational Therapist working in older peoples’ mental health. The project was focused in the organic assessment ward that I work within. It looked at the communication process from the inpatient setting to the care home. Our patient group is complex, and admission lengths at the commencement of the project were, on average, 98 days. There is some evidence that patients’ quality of life and functional ability decreases on discharge from hospital. I wondered if improved information sharing could also lead to improved outcomes for patients.
The discharge communication process is reliant on one nurse disseminating the assessments, interventions and treatments of the multi-disciplinary team on discharge. This means that important information from other clinical disciplines, such as occupational therapy, were not being shared with care homes when patients were discharged from hospital. Consistent and timely information sharing between the multidisciplinary teams hospital and care home staff sounds simple, but is not as straightforward as it seems.
What was the aim of your project?
I aimed to develop and implement a new information care procedure to make sure care homes were receiving all appropriate information about a patient when they were discharged. We were interested to find out if this process would also lead to improvements in patients’ quality of life, functional ability and Body Mass Index (BMI) on transfer.
How did you carry it out?
I used various methods recommended by the Improvement Science approach. A new discharge form was created through consultation with members of the multi-disciplinary team and community staff, including social work. Staff engagement was vital. Continuous education about the new project was required to inform and engage with new ward staff.
The impact of the project was measured using questionnaires with staff in the ward, care homes, and the liaison mental health team. Patient outcomes were measured using quality of life and functional ability scales, and body mass index (BMI) before and four weeks after discharge. Audits of the new discharge form measured how regularly and correctly staff were using the form.
What was the impact of your project?
Twenty patients were discharged from the ward over 6 months using the new discharge form: 13 were discharged to a care home and 7 returned to their own home. The 13 patients’ discharged to care home were evaluated pre-discharge and post-discharge at 4 weeks by telephone to the care home. One patient died during this time.
Over the six months of the project 98% of professions engaged in the form’s completion. The 12 patients demonstrated an increase in their BMI, 42% improved or maintained their functional ability and 75% improved or maintained their quality of life. All care homes reported a benefit to the increased information to their care of the patient.
This impact of improved sharing of information from hospital to care home appeared to improve patients’ quality of life, function and BMI on their transfer to a care home setting.
What were your conclusions?
The use of the new multi-disciplinary discharge form increased the level and consistency of information disseminated to a care home on discharge. The information aided care homes to shape their care for the patient.
There appears to be a positive impact of improving communication between the ward and care homes on patient outcomes as demonstrated through their BMI, Quality of Life and Functional Ability on discharge. However, this improvement was only measured over a short time frame with a limited number of patients, and without any control group.
What next for the project?
This project has shown that improved information sharing systems can increase the range of important clinical information that is shared and may benefit patient outcomes. I hope to continue to improve the discharge information sharing processes on the ward.
27 January 2017
Dr Mariasole Da Boit (University of Derby), Dr Angus Hunter (University of Stirling) and Dr Stuart Gray (University of Glasgow) have written in The Conversation:
“Fish oil supplements may seem like a relatively recent health fad but they have actually been produced in the UK on a large scale since 1935 by the company Seven Seas Ltd. Since then, the fish oil supplement market has continued to grow, with many beneficial effects claimed for health……….”
See the full article here.
24 January 2017