A small team from Staffordshire University, including Lisa Kyte (a current level 5 BSc Psychology and Child Development student at Staffordshire University) and Dr Dan Herron (Lecturer in Psychology at Staffordshire University) are carrying out some research exploring how the cost-of-living crisis is experienced by unpaid carers of people living with dementia.
Research has shown the potential financial challenges associated with being a carer (Gott et al., 2015) and specifically being an unpaid carer of a person living with dementia (Bayley et al., 2021). Being a carer has additional costs that can significantly impact their financial situation. Carers are likely to have been further negatively impacted by the recent cost-of-living crisis (Carers UK, 2022).
Since late 2021, the UK has been experiencing a cost-of-living crisis which has been driven by sharp increases in energy prices and the prices of everyday basics such as food. Carers UK (2022), early in the crisis, carried out a survey and the results illustrated the negative impact of increased prices on carers, with carers having to make tough decisions between food or heating. No research (to the our knowledge) has explored the views and experiences of unpaid carers of people living with dementia during the cost-of-living crisis.
Our study involves taking part in an interview (informal chat) about unpaid carers’ experiences during the cost-of-living crisis this can be in person (depending on location) or by telephone or online chat. If you are 18 years or over, and care and live with a person living with dementia, and are interested in taking part, please read the Cost of living Information Sheet. Please do share this information with anyone you think will be interested.
If you want to take part in this research, discuss it further or have any questions, please do get in touch with Dan (firstname.lastname@example.org or 01782 295866)
Hi, my name is Kim and I’m a mature student. I have just completed level 5 of aBSc Psychology and Child Development degree. Before University I had worked in nurseries, schools and children’s centres across Staffordshire but lacked the qualifications to progress in my career.
As a mature student I wanted to get the most out of my University experience, therefore I applied to be a Psychology Summer Research Intern for the last two years. The process was easy as the positions were advertised on Blackboard and the application involved explaining why you wanted to intern for your chosen project.
My Summer Research Intern Experience this Year:
This year the study I applied for is looking at the experiences of student carers, this appealed to me for two reasons. Firstly, I myself am a mum of two young boys, one of which has Autism, this made me curious to see if the experiences I have were similar to others in the same position. Secondly the research is a qualitative study. I feel that I have struggled with thematic analysis before and that this is my weak area in Psychology and I so I wanted to boost my skillset.
I was so pleased to have been selected to work with two lecturers on the project, Dr Dan Heron from Staffordshire University and Dr Jessica Runacres from Derby University. Not being particularly confident in qualitative research, and in my own abilities, they have helped me every step of the way through team meetings and regular emails.
Due to Covid-19 I have been able to join the project at the very beginning. Therefore, I have assisted with recruitment, theme generation and collating information for the introduction of the paper. Recently they have asked if I would like to be a named author on the planned publication. Not only will this look great on my C.V. but the experiences I have had will put me in a firm position to go onto further study. I definitely recommend applying for a summer research internship!
Interested in a Psychology degree? Come to an Open Day – for further details and to book your place at an open day please click here.
Supporting the changing needs and increasing dependency of someone with a learning difficulty (also known as learning disability or intellectual disability) and dementia can be challenging for carers and may impact on their wellbeing. Our own study (see Herron & Priest, 2013) has demonstrated carers’ lack of knowledge and understanding of the symptoms and progression of dementia, which may contribute to delay in referral to services, diagnosis, post‐diagnosis support and planning for life with dementia.
It is of the utmost importance that carers’ own needs are planned for and met. In reality, this may not be the case. To address the dual needs of learning difficulties and dementia, and to ensure carers are appropriately supported, some UK NHS services have developed specialised Learning Difficulty Dementia Care Pathways (LDDCPs), where existing learning difficulty staff are employed specifically in multidisciplinary teams to provide services for those service users developing dementia alongside their other non‐dementia services. We know little of how carers’ experience supporting people with a learning difficulty and dementia, and the role of LDDCPs. Therefore, this study aimed to:
Explore family and paid carers’ views and experiences of supporting someone with a learning difficulty and dementia.
Explore the role of healthcare professionals and support systems, with a focus on one Learning Difficulty Dementia Care Pathway, in the support of family and paid carers and people with a learning difficulty and dementia.
This is the first study to explore family carers, paid carers, and healthcare professionals’ views of the role of a LDDCP.
What did our research involve?
We recruited two family carers, eight paid carers and eight healthcare professionals (six DCP healthcare professionals [including a psychiatrist, community nurses and an occupational therapist] and two working in a housing and care organization [community nurses]). All participants took part in at least one interview each and were asked about their experiences and views of supporting someone with a learning difficulty and dementia, and the role of an LDDCP.
I worked closely with people with a learning difficulty to develop material for this study, which helped the study to reflect their own questions.
What were the main findings?
We used Constructivist Grounded Theory to thoroughly analyse what participants were telling us in interviews. Several findings were developed from the data.
The difficulty of obtaining a timely diagnosis and its impact on care
There were many factors which contributed to a lengthy, challenging diagnosis process which was underpinned by uncertainty for people with a learning difficulty and their carers. It was common for people to initially attribute any dementia-related changes to the person’s learning difficulty rather than dementia:
…it’s hard to know whether it’s just a problem with their [learning] difficulty…or it’s the start of dementia. I think we had a few years where we were very unsure. (Robin, Family Carer)
Carers’ lack of knowledge of the symptoms and signs of dementia also meant it was not until the later stages of dementia until a referral was made to the LDDCP.
There are many conditions which may mimic some of the symptoms of the dementia, making it a challenge to provide certainty of the underlying cause. At the time of this study, the LDDCP used a reactive approach to the assessment of dementia, which relied on carers and others noticing changes (something they found challenging), and then referring the person to the LDDCP for an assessment. However, reactive assessments may reduce the reliability and usefulness of assessments when baseline information (from when the person is healthy) is not available to compare the assessments against (BPS & RCP, 2015; McKenzie, Metcalfe, Michie, & Murray, 2018). Consequently, within the LDDCP, as baseline assessments had not been proactively obtained, it was sometimes difficult to make a clear diagnosis of dementia
The need for inclusive support
The participants highlighted the importance of meeting the person’s needs through a person-centred approach. However, not all carers found it easy to understand and implement the principles and approaches advocated within dementia support, which sometimes contradicted the support they provided to people with a learning difficulty:
…Coming from a learning difficulty background, when somebody believes or thinks something that’s not true, you try to explain to somebody that it’s not true…it kind of goes against the grain [not correcting person]…that’s a totally different way of supporting somebody…it’s something I found quite hard. (Glen, Paid Carer)
Paid carers were able to draw on a range of formal (LDDCP) and informal (peers) support which alleviated their burden and enabled them to provide the necessary dementia support. In contrast, family carer participants highlighted their challenges with accessing of formal support (LDDCP) and relied heavily on their other family members to share the burden.
Carer knowledge and training needs
Effective dementia care relied on understanding both dementia and learning difficulty. Carers and healthcare professionals illustrated the importance of proper training. Though paid carers had a developing understand of dementia care, prior to training they had poor knowledge of dementia and dementia care, and how this translated into caring for the person’s dementia needs; this had implications for support:
I didn’t understand much about dementia…in our heads it was just something that happened to old people, not younger people with learning disability and Down syndrome…I think we just managed. (Glen, Paid Carer)
Family carers, who had no support from the LDDCP, had a poorer understanding of dementia, which was reflected in their sometimes lack of understanding of how to appropriately care for their family member’s dementia needs.
Achieving “ageing in place”
Those providing care felt that the wellbeing of the person with a learning difficulty and dementia was best achieved by adapting care to the individual’s changing needs within their own home- this is referred to as ageing in place (Watchman, 2008). Participants had a strong commitment, strengthened by their close relationship the person, to ensuring they remained within their home for as long as possible, and felt that moving the individual would have a negative impact of the person’s wellbeing:
…it’s not home for them [dementia home]…they’ve all said it would have such a dramatic negative effect on their well‐being, it’s likely to increase the deterioration. (Pat, Paid Carer).
There was recognition that keeping the individual in their home was not always possible, and there may be times when the individual would need to be moved, to ensure their wellbeing. Without the necessary support, family carers did not feel they had the ability to safely support their family member in their home, and had to move them into a residential home with 24-hour support:
It was the best thing for them, you know. [Family member] was much better off. (Robin, Family Carer)
What are the recommendations of this study
There is a need for local health services to develop inclusive specialized learning difficulty Dementia Care Pathways.
There is the need to development of a comprehensive, accessible training package, which is informed by the study findings and the concept of person‐centred care (Brooker & Latham, 2016; Kitwood, 1997).
Organizations and services need to address the reactive culture that is sometimes seen and implement processes for effective dementia care planning.
To better ensure a reliable, timely diagnosis and early dementia care planning, there is a need for a combination of reactive assessments, proactive baselining and screening, and associated guidance.