Dr Amy Burton contributes to an edited collection of chapters on physical activity and visual impairment

Dr Amy Burton

Dr Amy Burton has contributed to an edited collection of chapters on physical activity and visual impairment. The book, entitled Movement and Visual Impairment: Research across Disciplines has been edited by Dr Justin Haegele and is an in-depth review of research spanning a range of disciplines including biomechanics, physical education and Paralympic sport.

Dr Burton’s chapter reviews the research evidence regarding physical activity interventions for older adults with vision impairment. The chapter includes an over view of her own work highlighting how engaging in physical activity in later-life can be particularly challenging for those with vision loss (Burton et al, 2016) with a number of psychological, social and societal factors contributing to low levels of engagement (Burton et al, 2018).

Visually impaired person walking

The chapter provides a detailed overview and critique of interventions designed to promote physical activity for older adults with sight loss. The majority of these have been dedicated to reducing falls risk and have shown limited success. In the chapter Dr Burton highlights how a focus on functional limitations in research has been at the expense of acknowledging other psychological, cultural, and societal barriers to engagement. The chapter ends with a call for researchers to further engage with the social motivators for exercise in older adults with sight loss and to pay greater attention to the potential for the psychological, in addition to physical, benefits of being more active.

To learn more or purchase a copy of this book visit: https://www.routledge.com/Movement-and-Visual-Impairment-Research-across-Disciplines/Haegele/p/book/9780367434397


Staffordshire University – The Home of Health Psychology

Staffordshire University has a history of excellence in teaching and research in Health Psychology, and is home to Staffordshire’s BPS Accredited Stage 1 MSc in Health Psychology and Stage 2 Professional Doctorate in Health Psychology. The Staffordshire Centre for Psychological Research has active team of Health Psychologists who conduct research and provide consultancy in a range of health-related issues.

Keep updated with the latest Health Psychology news from Staffordshire University via following us on @StaffsPsych @HealthPsyStaffs and via the #HealthPsychStaffs hashtag.

For further information about Health Psychology courses and research at Staffordshire University please visit the following webpages:

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.

Research exploring body image in Female Athletes

Our Dr Alison Owen writes about her research exploring body image in female athletes.

Research carried out at Staffordshire University has looked into body image in a group of British female athletes, to look into how they feel about their appearance, and whether they feel that appearance pressures have impacted on their athletic careers in any way. The research was carried out by Staffordshire University graduate Tess Allen, alongside Staffordshire University Health Psychology lecturer, Dr Alison Owen.

British female athletes were interviewed individually, and asked to discuss their thoughts and feelings about their body. All of the athletes reported feeling the need to maintain a particular appearance. The women also all reported feeling pressure from outside influences, including the media, as well as from the uniforms they had to wear for their sports.

A number of suggestions and recommendations have arisen from the research findings, including a need for interventions to maintain a positive body image in female athletes, as well as considerations for factors such as uniform choice.

The work has been published in the Journal of Qualitative Research in Sports Studies. If you are interested in reading the full article, or have any questions about the study then please contact Dr Alison Owen – alison.owen@staffs.ac.uk


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.

My experience completing the Staffs Psychology research internship and how it helped me!

Written by Matt Kimberley, BSc Psychology 2020 Graduate and Psychology PhD student

My name is Matt and I have just finished my undergraduate degree in Psychology with a first and I started my PhD in psychology in September (also at Staffs). During my time at Staffs I have fallen in love with the research side of psychology and this helped me set my sights on completing a PhD in psychology. To do this I knew research experience would be extremely helpful!  Thanks to the experience gained from completing the research internships (and one terrifying interview!) I have been accepted onto the Psychology PhD course at Staffordshire University and am due to start my research into the barriers people face in the disclosure of their sexual fantasies.

My experience completing two research internship during my undergraduate studies:

The first of these was during the summer of 2019 where I assisted Dr. Jade Elliott and Dr. Erica Lucas with their project which examined the influence of glucose on reasoning. This involved assisting with the transcription and coding of audio recordings of participants. Scores were then inputted into a spreadsheet. This internship really helped me to improve my skills in the management and organisation of data. This was incredibly useful during the data analysis stage of my third-year project which produced a very large database.

This year I applied for a research internship with Dr Sam Jones. This project looks at Digital Literacy. Through this summer, I have been helping Sam to find research into digital literacy and summarise and present this in a clear manner. I have found tables especially helpful for this as a means of presenting all the studies and the key information associated. As this is a new area of research for both myself and Sam, I have particularly enjoyed learning more about the area alongside Sam and sharing our findings through weekly teams meetings. Through this internship and my meetings with Sam, I feel my literature searching skills and the way that I organise research has improved massively. This will be very helpful next year when I am conducting a literature review for my own research! Through my work on this internship, I am being made a named author on the upcoming first journal article.

Through completing both research internships, my skills in literature searching and the management of research and data have improved. This has proved incredibly useful during my studies and will be useful when conducting my own research next year. If anyone is considering doing a research internship next year, I highly recommend it! Especially if you will be completing your third-year project the following year or are considering a career in research. The skills you will gain working alongside the lecturers will be incredibly helpful!


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.

Using photographs to explore what quality of life means to assisted living residents.

Dr Amy Burton


Dr Amy Burton has recently published a paper detailing a project conducted by one of our graduates as part of their MSc Health Psychology.

Riana Mansfield’s project was supervised by Dr Amy Burton and explored assisted living residents’ experiences of quality of life.


Assisted living is a popular form of housing care for older adults. Residents benefit from their own living spaces within a supportive environment including a range of services such as domiciliary care, health care and social activities.

Understanding quality of life for these older adults is important for ensuring assisted living residences provide the best possible service. However, little work had been conducted to uncover what quality of life means to older adults or how it is experienced on a day to day basis.

Riana’s project used a unique approach of collecting photographs taken by seven assisted living residents to better understand their lives. The residents collected images that captured their own personal meanings and experiences of quality of life. Riana then discussed these pictures with the residents through research interviews.

Stock photo from Pixabay of a woman holding a camera to take a photo.

A form of qualitative analysis called Interpretative Phenomenological Analysis (IPA) was then used to identify common themes and experiences in the residents’ accounts. Riana’s work highlighted three themes that helped to explain and understand quality of life in assisted living.

  1. Firstly, the residents believed it was important to have continuity in their lives and found new ways to continue with activities that they enjoyed or were important to them prior to assisted living.
  2. Secondly, they discussed how social events and opportunities to make new friends within assisted living were essential for ensuing good quality of life. Several enjoyed supporting other less confident residents to be part of the community.
  3. Finally, the residents spoke about the supportive environment provided by the assisted living facility. This helped them to feel safe and provided access to services and support that would aid them as they became older.

Riana and Amy’s paper concludes by making recommendations to enable assisted living facilities to help their residents maintain good quality of life. These included: supporting residents to continue with valued and meaningful activities following a move to assisted living; setting up peer support buddy systems to assist new residents with becoming part of the community and to engage them in social activities; and discussing quality of life with residents and tailoring care and support to reflect the needs and wants of individual residents.

The research paper has been published in Geriatric Nursing and can be accessed here if you would like to read about the research in more detail (https://doi.org/10.1016/j.gerinurse.2020.03.021).


Staffordshire University – The Home of Health Psychology

Staffordshire University has a history of excellence in teaching and research in Health Psychology, and is home to Staffordshire’s BPS Accredited Stage 1 MSc in Health Psychology and Stage 2 Professional Doctorate in Health Psychology. The Staffordshire Centre for Psychological Research has active team of Health Psychologists who conduct research and provide consultancy in a range of health-related issues.

Keep updated with the latest Health Psychology news from Staffordshire University via following us on @StaffsPsych @HealthPsyStaffs and via the #HealthPsychStaffs hashtag.

For further information about Health Psychology courses and research at Staffordshire University please visit the following webpages:

Research Assistant during Covid-19

Written by Gina Halliwell, BSc Psychology and Child Development 2020 graduate.


BSc Psychology and Child Development graduate 2020! YAY! Not the most ideal year to graduate but made it there successfully in the end!

Graduate, check.

Research Assistant position during coronavirus, check!

Who would have thought with all the difficulties of 2020 I would complete my degree and get the chance to be a Research Assistant with Staffs! Coronavirus couldn’t have been a better opportunity really, being able to investigate children’s experiences of the pandemic through collecting their drawings.

This opportunity appeared when my Level 6 Project Supervisor Dr Sarah Rose emailed me to say she was involved in planning some research into children’s experiences of coronavirus and if the ethics and funding were approved would I like to be their Research Assistant? Of course! What an incredible opportunity!

Example drawing submitted for the research

When the project was approved we had our first virtual meeting as a project team, over Microsoft Teams! I got to meet and discuss the project with Dr Richard Jolley, Dr Claire Barlow, Dr Romina Vivaldi and of course Dr Sarah Rose. All of the meetings and communication took place online via email and Microsoft Teams, having always had face-to-face meetings throughout university this was a very odd change! Despite a few device and connectivity issues we managed, and everything worked out.

As the project began I was given responsibility for a number of tasks including background research, recruitment (both sourcing contacts and contacting those contacts), responding to queries and writing up the background research to begin forming the report’s introduction. Recruitment for the project was aimed at the whole of the UK so an important part of my role was to reach out to organisations, schools and social media groups from across the UK. This was difficult due to the varying school term times of the four countries and the general closing down of society due to the pandemic.

Example drawing submitted for the research.

Once recruitment was on its way I was able to get into the background research in preparation for the introduction. Having taken the Children’s Drawings module at Level 6 I already had an understanding of how children’s drawings are investigated and analysed and so I could focus on research more specific to the project such as research that focused on children’s drawings of illness, disease outbreaks and trauma. When conducting the background research searching I was able to use all of the literature searching skills I have gained over my 3 years at Staffs. If you are looking for an easy way to gather research with all the key information in one place I recommended putting it into a table, a tip that Dr Sarah Rose shared with me!

An example table of how to organise literature


If you get the opportunity to do any sort of Research Assistant position, go for it! It’s great work experience, it looks amazing on your CV and it’s fascinating to be able to work alongside the lecturers you see all the time!

If you would like more information on the project please do have a look at the project’s website (www.coviddrawings.org.uk) or if you have any questions please email research@coviddrawings.org.uk (we are still recruiting!). You can also read more about the project in a recent blog by Dr Richard Jolley.


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.

Children’s drawings of their coronavirus experience

Dr Richard Jolley writes about recent coviddrawings research and how you could help!

How has the current coronavirus situation changed the lives of children? What would the children themselves tell us?

The current coronavirus situation presents a unique opportunity to discover the diverse characteristics and consequences of a pandemic upon children. When children are facing changes and challenges to their lives it’s important to allow them to communicate how they are thinking and feeling. Sometimes they’re happy to talk about their experience, but sometimes they prefer to express themselves in other more creative ways, such as making a picture.

Dr Richard Jolley

Since June of this year a group of researchers in the Department of Psychology at Staffordshire University have been asking children and parents across the UK to help us understand how children are experiencing the coronavirus situation through their drawings. It is being led by myself, Dr Richard Jolley, with co-investigators Dr Sarah Rose, Dr Claire Barlow and Dr Romina Vivaldi. It has been funded by the School of Life Sciences and Education (LSE). This has enabled us not only to purchase a dedicated website and database for the project but also to employ a final year student (Gina Halliwell) as a research assistant to manage the day-to-day running of the project. You may like to read Gina’s own blog on her research experience on the project!

So what is involved in the project?

Parents are directed to the website www.coviddrawings.org.uk where all the information about the project and what they need to do is provided. We even have made a video just for children to explain the project! In essence, children are asked to think about their life since the coronavirus entered the UK, how it might have changed their lives, how they have felt about that, and then to draw a picture about it. There is a comments box provided if the child wishes to write about their drawing (potentially with the parent’s help).  A parent then takes a picture of the drawing and uploads it to the website.

So, what themes might you expect children to show in their drawings? The highly transferable nature of the virus? Or perhaps the behaviours we have all been asked to do to limit the risk of transmission – washing hands, social distancing, wearing masks, and self-isolation? Then, there is the psychosocial impact upon the children, particularly the isolation from friends during the lockdown. Will children show psychological reactions of fear, sadness or loneliness? And what about the changes in the routine of their lives, such as disruption to school attendance and different family dynamics at home? Has this led to boredom and restlessness, or presented an opportunity to spend more time on activities and family they love? Despite the challenges the current situation has brought children we are seeing children communicate more positive aspects through their drawings. 

What themes can you see in this drawing?

Whatever themes the children communicate we are interested in whether they vary across the ages of the sample, which might indicate that developmentally children have experienced the current situation differently. Also, will there be differences in the themes communicated between boys and girls? In addition to age and gender, we will be exploring whether the themes vary according to a set of demographic and situational variables. For instance, which country the child lives in, whether they live in a rural or urban environment, if either parent is a key worker, and whether the child returned to school – all of these could have an impact on how the child draws their experience of the coronavirus. In addition, we ask the parents to indicate on a scale the extent in which the family health has been affected by the coronavirus situation, and ask the child to choose from a series of faces how they have felt about their life in these times.

Would you like to participate?

And here is the good news – we are very keen to recruit more children and parents! If you are reading this blog as a parent of a child between 4 and 14 years, and you live in the UK, do you think your child would like to draw their own experience of the coronavirus situation? In which case please have a look at the project’s website www.coviddrawings.org.uk If you have any further questions please contact the project email address research@coviddrawings.org.uk and we will respond as quickly as we can to your query.


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.

LJ Potter joins the Psychology Department at Staffordshire University!

By LJ Potter, Lecturer in Counselling.

I joined the Psychology team at Staffs in July 2020. Previously, I’ve taught Counselling and Psychology at other institutions. Although it’s an odd time (in a pandemic) to be starting a new place of work I’ve enjoyed it so far. It’s a friendly and welcoming place to be!

About me:

I’m a genderqueer psychotherapist (with they/them pronouns) who specialises in working with queer people and topics. My Psychology career began in 2002 when I completed my BSc at Coventry University. On graduating I wasn’t ready to put studying aside, but also needed to move home to a town that did ot have easy university access, so I was really glad when Coventry introduced an online Parapsychology Master’s degree.

The study of the paranormal has always really interested me, thinking about whether these experiences are 1) something that (largely) arises from inside of us (whether it is another ‘sense’ that we don’t fully understand) or 2) whether they are experiences that exist outside of us and happen to us. The degree was fascinating and didn’t require a belief one way or the other, and spending a year unpicking some of this was really fascinating. Sadly, parapsychology is a difficult area to make a living within, and I was also interested in working with people and mental health, so this is where I started to focus my studies.

I went to the Sherwood psychotherapy training institute (SPTI) and completed a PgDip in person-centred counselling and psychotherapy. Whilst I was in training I began my own charity that provided free and low-cost counselling for people who identified as LGBT or who were in different kinds of relationship styles (such as consensually non-monogamous or kink-based relationships). My aim was to create a place where people whose sexual lives where outside of standard norms could be met with understanding. The charity became very successful, going from being just me at the start, to in 2020, having ten volunteer counsellors and a long waiting list of LGBT people wanting to access our service.

Alongside this I have been studying for a PhD in psychology looking at experiences of gender and sexuality in UK high schools and am currently in ‘writing up’, which a process that never seems to end!

My research interests are mainly focused around gender and sexuality and people’s experience of those in counselling relationships. I am interested in publishing widely in that field, including a paper that I hope will go in for publication soon on therapist disclosure of non-cisgender identities.

I’m very much looking forward to September and the start of teaching and really starting to find my feet in the team.


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.

Meet Level 5 Student Kim Buckless and her experiences of Summer Research Internships

About Me:

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.

How can we measure Self-Directed Ageing Stereotypes in Older Adults?

Dr Sarah Dean and Dr Amy Burton tell us about their Staffordshire University REF 2020 research scheme funded project into self-directed ageing stereotypes in older adults. The research was carried out with research assistant Weyinmi Demeyin and graduate Jessica Reeves.

Dr Sarah Dean and Dr Amy Burton

The population is ageing, but while average life expectancy continues to increase, healthy life expectancy has not necessarily matched this. Health psychologists are interested in health across the lifespan and we wanted to explore health in older adulthood to identify some of the barriers to healthy ageing, specifically those relating to ageing stereotypes.

There are lots of stereotypes surrounding ageing, which are often very negative. If an older adult internalises these negative stereotypes, meaning that they believe them to be true for themselves, this may have a negative effect on their health and wellbeing.

To explore ageing stereotypes in older adults we needed a way of measuring if people had internalised these beliefs. We found that lots of different measures existed and it was unclear which was the best measure to use. Therefore, we carried out a systematic review to identify measures of self-directed ageing stereotype in older adults and to evaluate their quality.

We identified 109 papers for inclusion in our review. Over 25 different terms were used to describe internalisation of ageing stereotypes in older adults. We therefore suggest that for consistency the term “self-directed ageing stereotype” is used and we found 40 different measures of this existed.

The most commonly used measures were the Philadelphia Geriatric Centre Morale Scale Attitude Towards Own Ageing (ATOA) subscale, Ageing Perceptions Questionnaire (APQ) and Attitudes to Ageing Questionnaire. However, although it was the most frequently used, the ATOA was developed to measure morale in older adults and not self-directed ageing stereotypes.

Across measures, poor reporting of psychometric properties made it difficult to assess scale quality and more research is needed to fully assess measures before conclusions can be drawn as to the best tool; however, the Brief-APQ appears to hold most promise. Future research must address this issue before interventions to reduce negative self-directed ageing stereotypes can be developed and fully evaluated. Our research also highlighted the importance of researchers making sure that the measure they have chosen is suitable for their purpose.

We are really pleased that our article has been published in the European Journal of Ageing. The article can be accessed here if you would like to read about the research in more detail (DOI: 10.1007/s10433-020-00574-7).


Staffordshire University – The Home of Health Psychology

Staffordshire University has a history of excellence in teaching and research in Health Psychology, and is home to Staffordshire’s BPS Accredited Stage 1 MSc in Health Psychology and Stage 2 Professional Doctorate in Health Psychology. The Staffordshire Centre for Psychological Research has active team of Health Psychologists who conduct research and provide consultancy in a range of health-related issues.

Keep updated with the latest Health Psychology news from Staffordshire University via following us on @StaffsPsych @HealthPsyStaffs and via the #HealthPsychStaffs hashtag.

For further information about Health Psychology courses and research at Staffordshire University please visit the following webpages:


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.