How do care providers’ view and experience supporting people with a learning difficulty and dementia?

Dr Daniel Herron

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.

Stock image of 2 people talking (https://www.pexels.com/photo/photo-of-men-having-conversation-935949/)

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.

Stock image of two women on a beach (https://www.pexels.com/photo/woman-standing-beside-woman-on-white-wooden-chair-facing-body-of-water-160767/)

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)

Stock image of two people walking (https://pixabay.com/photos/dependent-dementia-woman-old-age-441408/)

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


Ambassadors Open Day Staffs Uni

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.

Staffs Student Stories – Meet Sophie Jarrett, Level 5 BSc (Hons) Psychology Student

Why did you apply and how did you get a place on the course?

I am originally from Stoke-on-Trent and locally studied A-Levels at my school’s sixth form college. I decided to come to an open day at the university after visiting a handful of others around the country. When I came to Staffordshire University, I saw that the facilities here were incredible, that the accommodation was much nicer than other universities, and the Psychology Department was lovely. When I realised, I could have the same independence living away from home on campus, but also being a 15-minute drive away from family, it was an obvious first choice. I received an unconditional offer and I’ve never looked back!

What has been the best part of the course? 

In my first year, I enjoyed my ‘People Behaving Badly’ module, which taught reasoning behind abnormal behaviours. It was interesting to understand why people may behave in a different way. In my second year, I have really enjoyed my ‘Contemporary Issues in Psychology’ module, as it allowed me to see how the knowledge from my lectures and seminars can be applied to real-life scenarios as a Psychologist.  

What are the biggest challenges you’ve had to overcome and how have you overcome them, while studying with us? 

A challenge I have had at university is getting used to presentations. I have an Autistic Spectrum Condition, so presenting to others has never come to me naturally. Nevertheless, I started by just presenting to my lecturers and now by the end of my second year, I can engage in class discussions and lead presentations in front of my classes. Initially I also struggled with statistics and working with numbers. I could never get my head around the different statistical tests and what they were for. But my seminar leader, Dr Zachary Parker, really helped break down what each statistical test is used for, which really aided my understanding of psychological statistics.  

What are your next steps and plans for the future? 

I am an aspiring Clinical Psychologist. I would like to work in the National Health Service and therefore my aims after my undergraduate degree is to continue on to postgraduate study in the hope of a place on the highly-competitive Clinical Psychology Professional Doctorate here at Staffordshire University.

Would you recommend our course to others? 

Psychology is the study of mind and behaviour so it can be used in any career. I’d recommend this course to anyone with an interest in psychology, especially if you would like a hands-on experience, as at Staffordshire University, you get practical experiences which you can use for your final year project or research throughout your time at Staffordshire University. 


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.

Why everyone should know their attachment style – Professor Helen Dent writes for The Conversation

Professor Helen Dent (Emeritus Professor of Clinical & Forensic Psychology, Department of Psychology, Staffordshire University has written a short article for The Conversation UK about the need to understand your own attachment style in relation to your mental and physical health, amongst other outcomes.

The Conversation UK is a free news service featuring articles written by academics on a range of topics and current affairs. Staffordshire University is a member of The Conversation and Read the full article below:

The Conversation: Why everyone should know their attachment style

Watch out for more Conversation articles written by the members of the Staffordshire Centre for Psychological Research!


The Department of Psychology at Staffordshire University offers a range of undergraduate and postgraduate degrees in Psychology at the University’s £30 million Science Centre in Stoke-on-Trent. The department is home to the Staffordshire Centre for Psychological Research, a large and active group of psychologists, PhD students and researchers conducting work into a variety of psychological disciplines and topic areas.

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.

For more information about the Psychology degrees on offer at Staffordshire University please visit the below pages:

New research shows a positive relationship between ADHD and autistic traits in adults

Dr Maria Panagiotidi

Dr Maria Panagiotidi (Lecturer in Psychology & member of the Staffordshire Centre for Psychological Research) blogs about her new research:

In a recent paper published in the “Journal of Attention Disorders”, we found that there is a positive relationship between Attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) traits. Specifically, adults who reported more inattention and hyperactivity symptoms, also reported more behaviours related to autism spectrum conditions (e.g., difficulties in communication).

ADHD is the most common neurodevelopmental disorder and in roughly half of the children diagnosed with ADHD, symptoms persist into adulthood. It is characterised by attentional difficulties, hyperactive/impulsive behaviour, or both. ASD is a developmental disorder that severely affects development in three main areas: language ability, social interaction, and stereotyped or repetitive behaviours. Clinical and genetic studies suggest that these conditions often co-occur and share genetic susceptibility. ADHD and ASD can both be viewed as the extreme end of traits found in the general population.

In collaboration with Dr Tom Stafford and Professor Paul Overton from the University of Sheffield we examined the co-occurrence of ADHD and ASD traits in an adult healthy population. In total, 334 participants were recruited and were asked to complete a number of online questionnaires measuring current and retrospective (from their childhood) ADHD and ASD symptoms and behaviours. A positive relationship was found between ADHD and autistic traits. In particular, higher inattention and overall ADHD scores were associated with self-reported deficits in communication and social skills. Both childhood and current ADHD traits were associated with autistic symptoms. The only autistic symptoms not associated with ADHD scores were related to attention to detail. This finding suggests that that tendency to focus on detail might be specific to autism.

Overall, our results are similar to findings from previous studies on clinical populations, in which a significant overlap exists between the two conditions. This further supports the dimensionality of ADHD and ASD, and suggests that these disorders might share substantial aetiology.

You can read the publication via the below link:

Panagiotidi, M., Overton, P. G., & Stafford, T. (2017). Co-occurrence of ASD and ADHD traits in an adult population. Journal of Attention Disorders. Advance Online Publication. doi: 10.1177/1087054717720720


The Staffordshire Centre for Psychological Research is home to research activity in the Psychology Department at Staffordshire Centre. The Centre is home to a number of research-active psychologists who are engaged in research across a wide range of psychological subdisciplines. The Centre has two overarching research streams: Health and Behaviour Change and Applied Perception and Cognition.

The Centre provides training for PhD students, Research Masters degrees, as well as Professional Doctorates in Clinical and Health Psychology (click here for more details). The Centre also provides bespoke training to private and public organisations, as well as expertise for consultancy research opportunities. For more details about the Centre, its research activities, events and consultancy, please visit our website (click here).

World Bipolar Day 2017: Raising awareness & new research at Staffordshire University

This Thursday (30th March 2017) is the annual World Bipolar Day, a day to raise awareness and understanding of Bipolar-related conditions and reduce stigma. World Bipolar Day is held on the same date as the birthday of Vincent van Gogh, the renowned Dutch artist who likely experienced some form of bipolar-related condition. Dr Robert Dempsey, Lecturer in Psychology at Staffordshire University, conducts research to understand the role of psychosocial factors in the experience of and vulnerability to bipolar.

Dr Dempsey comments that around one in every hundred people experiences a bipolar-related condition. People living with bipolar experience changeable moods including mania, a heightened state associated with increased behavioural activity, energy and speeded thoughts, and depression, including the experience of low mood, sleep difficulties and low energy. There are many other experiences associated with bipolar-related conditions, including increased anxiety, psychosis and other general health-related issues, so people’s experience of bipolar can vary. People living with bipolar also often report difficulties in their social and personal lives, and have an increased risk of dying by suicide compared to the general population. Estimates suggest that around 19% of people with a clinical diagnosis of bipolar die by suicide, but this could be an underestimate given that some people do not come into contact with healthcare services and may not receive a bipolar diagnosis, so the actual rate could be higher. It is important to note that many people with bipolar maintain a high quality of life, self-manage the symptoms associated with a bipolar diagnosis very well, and many attribute positives with their diagnosis such as increased empathy, creativity and enhanced emotions (Lobban et al., 2012).

The research we conduct here at Staffordshire University does not treat bipolar as an ‘abnormal’ experience, rather we see a bipolar continuum on which everyone in the general population is located, with some experiencing more severe and changeable moods than others. We focus on understanding the interaction between psychological and social factors in people’s experiences of bipolar and have conducted various studies in this area (1, 2, 3, 4).

Our current research has investigated the role of appraisals of an individual’s social environment in the experience of suicidality for people living with bipolar. We have conducted qualitative interview studies to understand the role of various social factors in the experience of suicidality for people with bipolar (5), the complex relationship between bipolar and social functioning and vice versa (6), as well as the experience of talking about suicidality in our interviews from the perspective of our participants (7). We are currently analysing data from a quantitative study investigating the prospective predictors of suicidality in a sample of people with bipolar, and have already reported that feelings of defeat and internal entrapment (feelings of being trapped by one’s moods and thoughts) are a predictor of increased suicidal ideation over time (8). By better understanding the psychosocial precursors of suicidality experienced by people with bipolar we can inform the development of more effective, targeted interventions to improve outcomes for people living with bipolar.

I hope that World Bipolar Day helps to raise awareness of bipolar-related conditions, improve the understanding of the varied experiences associated with bipolar, and helps to reduce the stigma that is often associated with bipolar and other related conditions.

Dr Rob Dempsey was also briefly featured on the BBC Radio Stoke news bulletins on 30th March discussing his research into suicidality and bipolar (click here to listen: from 3:15 into the programme).

WBD is an initiative of International Bipolar Foundation (IBPF) in collaboration with the Asian Network of Bipolar Disorder (ANBD) and the International Society for Bipolar Disorders (ISBD). For more information about World Bipolar Day please visit http://ibpf.org/webform/world-bipolar-day.


Dr Rob Dempsey is Co-Director of the Staffordshire Centre for Psychological Research, home to psychology-related research at Staffordshire University.  The Centre is home to a number of research-active psychologists who are engaged in research across a wide range of psychological subdisciplines. The Centre has two overarching research streams, Health and Behaviour Change, and Applied Perception and Cognition.

The Centre provides training for PhD students, Research Masters degrees, as well as Professional Doctorates in Clinical and Health Psychology (click here for more details). The Centre also provides bespoke training to private and public organisations, as well as expertise for consultancy research opportunities. For more details about the Centre, its research activities, events and consultancy, please visit our website (click here).

World Suicide Prevention Day 2015: New research with people with Bipolar Disorder

Rebecca Owen, PhD Student

Rebecca Owen, PhD Student

Rebecca Owen, a PhD Student co-supervised by Dr Rob Dempsey (Lecturer in Psychology, Staffordshire University), reports on her current research investigating the role of psychosocial factors:

With this week being National Suicide Prevention Week, I thought it might be interesting for psychology students and the general public to see how a topic as sensitive as suicide is tackled from a psychological research perspective. Our work is investigating experience of suicidal thoughts, feelings and behaviours or attempts (also known as, “suicidality”), in people with a diagnosis of bipolar disorder. Despite numerous suicide prevention efforts from various sources including, the NHS and charities such as Samaritans, suicide remains the leading cause of death amongst men aged 15 to 44 in the UK. Every four minutes someone makes a suicide attempt and every hour and a half someone dies – so it really is an epidemic.

2015_wspd_banner_englishSuicide tends to be investigated in terms of risk factors. Research studies will try to identify factors which put an individual at a greater risk of either becoming suicidal or attempting to end their life. Common risk factors include gender (being male is typically associated with greater risk), age, employment status, marital status, a previous suicide attempt and a mental health diagnosis. Although these factors can help to predict who might become suicidal, they don’t really tell us anything about why someone became suicidal. For example, simply being male and unemployed doesn’t give us any explanation of the underlying psychological processes and pathways which led to the development of suicidal feelings.

This is where our work comes in – we’re interested in finding out more about these underlying psychological processes. For example, feeling hopeless, feeling defeated and trapped within a situation, feeling like you can’t cope. By understanding more about these processes, we hope that we’ll be able to better inform psychological interventions which specifically aim to change these processes in order to reduce suicide risk in bipolar disorder.

This type of research is a relatively new area in the field of bipolar disorder, so we started off by conducting an exploratory qualitative study with 20 participants (click here to view the paper’s abstract). We found that factors which protected against suicidal behaviour included, (1) thinking about the impact that suicide would have upon family members and friends, and (2) having a strong social support system. We found that triggers for suicidal thoughts included, (1) experiencing mental health stigma, and (2) feeling like a burden to other people.

Participants sought: Do you have a diagnosis of Bipolar Disorder?

These qualitative findings have informed a larger, quantitative, questionnaire based study which we are currently recruiting volunteers for. Recruitment for the questionnaire study will close by February 2016. If anyone would like any more information about our work or would like to take part, please get in touch with me directly by email at Rebecca.owen-6@postgrad.manchester.ac.uk or by phone on 0161 275 2593.

World Suicide Prevention Day 2015


Annual Staffordshire Clinical Psychology Trainee Conference a Success!

RG Aug15

Trainees at the 2015 Conference

Ruth Graham, a current trainee Clinical Psychologist at Staffordshire University, reports on a success conference for trainees hosted at the University in the Summer of 2015.

The Clinical Psychology Trainee Conference took place in June and was deemed a great success. This year marked a new turn for the conference, as two trainees designed and ran the day. Following last year’s successful conference about service user involvement, trainees were keen to lead the way in being open and honest about the personal and professional challenges faced by psychologists.

The theme for the conference was ‘Creating Breathing Space’ and it was designed with the intention of being an experiential breathing space on the day, as well as figuring out new ways to find breathing space within trainees’ personal and professional lives.

Trainees writing their personal reflections about the challenges of accessing self care in their personal lives.

Trainees writing their personal reflections about the challenges of accessing self care in their personal lives.

The morning included some action participatory research that allowed for group discussions and individual reflections on the challenges to accessing self care across different areas, such as university, year groups, the NHS, the therapy room, personal life and the world. This was then followed by a brilliant and well received talk on video by Professor Delia Cushway, a consultant clinical psychologist who has spent much of her career exploring trainee and professional stress amongst psychologists.

The trainees listening to Professor Delia Cushway.

The trainees listening to Professor Delia Cushway’s video talk.

The afternoon was filled with a variety of workshops that had different takes on breathing space. They included art therapy – where therapeutic slime was met with varying reactions!

A space for mindfulness was a welcome relief amidst a busy day, whilst Konnektiv Arts, a community drama company, offered thoughtful discussion on the presentation of mental health. Neuro-circus added a fun and different approach to self-care as many tried out their balance and juggling skills.

Trainees gathered together at the end in order to offer final reflections and comments on breathing space and how it can be found and fought for in the workplace. Creative reflections led to a tie dye ripple effect wall hanging that reflected the collective impact of individual steps to find breathing space.

The ripple effect and two trainees who have enjoyed the day.

The ripple effect and two trainees who have enjoyed the day.

Overall the day was a great success, with trainees enjoying being together and having the space to look after themselves, both in the moment and going forward. Look out for a more in-depth presentation and experience of the conference in the exhibition room in The Science Centre, 28th September to 2nd October!

For more information about courses in Psychology and Clinical Psychology at Staffordshire University please visit our course pages here.