Dr Daniel Herron discusses his recent research findings on supporting people with an intellectual disability and dementia.

Why is it important?

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.

If you would like to discuss any of this blog and/or my paper further, please do contact me at daniel.herron1@staffs.ac.uk or on Twitter @DannyLeeHerron

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