Time for Dementia – Sussex Partnership

The Time for Dementia programme has been running since November 2014, and it aims to enable future health care professionals to work better with people with dementia and their care-givers. The programme does this by providing student learners with on-going contact with a family affected by dementia over a two-year period. Students visit a family (in pairs) 3-4 times a year. The programme aims to improve student knowledge, attitudes and empathy towards people with dementia and their care-givers. Additionally, the programme aims to provide students with a more balanced view of what it is like to live with dementia both from the perspective of the person with dementia and the caregiver, as well as increased insight into living with other physical health problems. The programme has been embedded into the curriculum for nursing and paramedic students at the University of Surrey and for medical students at the Brighton and Sussex Medical School. To date, 600 families and 850 students in Surrey and Sussex have taken part in the programme.

Co-Production

  • From start: No
  • During process: Yes
  • In evaluation: No

Evaluation

  • Peer: Yes
  • Academic: Yes
  • PP Collaborative: Yes

Find out more

 

 

 

What We Did

An estimated 800,000 people living with dementia in the United Kingdom (UK), this figure is predicted to rise to 1.7 million by 2051 (Alzheimer’s Society 2014). People with dementia are significant users of healthcare services, and there are significant shortcomings in the care provided, attitudes and training of staff, and problems with care cultures (Dewing & Dijk, 2014, Gladman et al, 2012)
Consequently, there is a need to ensure that the healthcare workforce is skilled in providing high quality care to people with dementia. UK policy context is clear – dementia education needs to be improved. Deficiencies in both knowledge and skills of healthcare professionals caring for people with dementia were highlighted in the The National Dementia Strategy (DH 2009).
However healthcare educators are faced with the challenge of how to integrate dementia care into the undergraduate curricula with its prominent emphasis on acute episodes of care.
The Time for Dementia programme has been set up to address this challenge. It has been running since November 2014, and it aims to enable future health care professionals to work better with people with dementia and their care-givers. The programme does this by providing student learners with on-going contact with a family affected by dementia over a two-year period. Students visit a family (in pairs) 3-4 times a year. The programme aims to improve student knowledge, attitudes and empathy towards people with dementia and their care-givers. Additionally, the programme aims to provide students with a more balanced view of what it is like to live with dementia both from the perspective of the person with dementia and the caregiver, as well as increased insight into living with other physical health problems.
The programme has been embedded into the curriculum for nursing and paramedic students at the University of Surrey and for medical students at the Brighton and Sussex Medical School. To date, 600 families and 850 students in Surrey and Sussex have taken part in the programme.
Similar programmes have been set up in America, but not in the UK, however these have been small in scale and offered as an optional rather than a mandatory component of the curriculum and have only been run in medical schools. This is the first programme worldwide to form a mandatory component of health professional training across a range of disciplines.

Study team:
Principal Investigator: Prof Sube Banerjee, Centre for Dementia Studies, Brighton and Sussex Medical School
Programme Lead: Dr Stephanie Daley, Centre for Dementia Studies, Sussex Partnership
Research Assistants: Leila Hughes, Marcela Carvajal with support from our team at the Dementia Research Unit based in Crowborough.
Patient involvement coordinator: Jean Southey, Sussex Partnership
Patient involvement from: Rob and Pippa Stanley
Due to the success of Time for Dementia programme, it is intended that the programme will be rolled out across Sussex and Kent to a further 1600 healthcare professional students over the next 5 years.
There is a linked Time for Dementia research study which aims to evaluate the effectiveness of the programme on student outcomes, satisfaction with the programme and family outcomes. All participants (families and students) are invited to take part in the research study, and the preliminary findings have been used, and will continue to be used to support the iterative development of the programme.

This study is still recruiting and people can still take part
We are still looking for families in Sussex and Surrey to take part in the programme. This involves the person with dementia and their carer having students visit them together about once every three months. Any diagnosis of dementia would be suitable and also we are including people without capacity to consent. If you would like to know more about the programme, or if you know a family who would like to take part, please contact:
Dr Stephanie Daley at: s.daley@bsms.ac.uk
Or dementiaresearchunit@sussexpartnership.nhs.uk
 

Wider Active Support

Partnership working has been integral to the success of this programme. Time for Dementia is run by the Centre for Dementia Studies, a joint initiative of Sussex Partnership NHS Foundation Trust and Brighton and Sussex Medical School. The programme is run in collaboration with the Alzheimer’s Society, the University of Surrey, and Surrey and Borders NHS Foundation Trust. The recruitment of families into the programme requires very close working between the Alzheimer’s Society and the two NHS trusts, and the integration of the programme into the curricula at both universities has involved joint planning and monitoring. There has been a need to develop a programme ethos, and to work across organisational boundaries, to jointly agree programme objectives, to work flexibly and problem solve when difficulties arise and to address practical issues, such as data-sharing and governance requirements. Partnership working is formally supported by a quarterly Programme Board meeting with all partner agencies, and a monthly site meeting with each of the universities.

 

Co-Production

We have involved users and carers in five distinct areas in the programme.
First, we have a dementia involvement group at Sussex Partnership who we consult at every stage of the programme to make sure that the related research study content has been accessible to patient and carers. For example, we consulted with the group about how best to carry out qualitative interviews with the families involved, including the development of a topic guide.
Second, we have a family (person with dementia and their carer) on the Time for Dementia Programme Board. The family are actively involved in monitoring the progress of the programme, feeding back on their own experience of having student visits, and supporting delivery of the programme to students (eg through the delivery of lectures to students). The family are also involved in wider dissemination of the programme, for example, delivery of a lecture at our stakeholder conferences in 2016 and 2017 and also publicity, for example, a family interview with the Radio 4, You and Yours programme on 26th September 2016.
Third, we have carried out a satisfaction survey with families (both the person with dementia and their carer) at 12 months, and this will be repeated at 24 months. Additionally, we have carried out individual in-depth interviews with families (n=18) and a further 10 interviews are planned. The findings from these surveys and interviews have helped us to make improvements to the families, eg asking student to provide more detailed feedback to families about their own learning about dementia and providing guidance to both families and students about managing the final visit.
Fourth, we have built a network of TfD ambassadors. These are families involved in the programme who have worked closely with the Time for Dementia team in an advisory capacity which has involved reviewing programme guidance (eg family letters, student guide), undertaken publicity activities (Time for Dementia film, local press articles and television (BBC South Today, October 2015) and who have supported recruitment (of families) across their peer groups. We have also set up an on-going programme of family engagement events.
Fifth, the first Time for Dementia conference was held in June 2016 which bought together students (n=298) and families (n=60) involved in the programme to review progress so far. Based on the feedback from those involved in the programme, amendments to the programme were made including enhancing guidance to both students and families as well as involving a student and family representative in the future planning and development of the programme.
Our second stakeholder conference is due to take place on 31st May 2017, and so far 91 people with dementia and their carers have registered to attend.
Staff involvement is a key element of the iterative development and improvement of the Time for Dementia programme. The team review family and study feedback data from the research study, to identify improvements to the programme. This takes place formally in our quarterly Programme Board as well as in our monthly site meetings at both universities. We also have student representatives from each university on the Programme Board.
Additionally, we also have a dissemination plan; which makes clear a programme of communication and feedback to and from staff across all of our partnership organisations. This involves sharing programme materials and evaluation findings (eg Time for Dementia film) and visiting staff teams to discuss the programme and attending module review boards at each university.

Looking Back/Challenges Faced

At the beginning, we should have allowed more time to raise awareness of the programme in order to recruit the necessary number of families, as we are predominantly reliant upon colleagues recommending the programme to families. In the roll out of the programme across Kent and Sussex, we have factored in a more realistic timescale.
We did not appreciate how much movement there might be in both the student and family groups. For the students, this means that there is constant change in the student numbers and has meant administratively that we have needed to respond to students intermitting or returning to studies. For families, we have identified that attrition (due to death or illness) is 15% per annum, again in the roll out of the programme across Kent and Sussex, we have factored in more realistic target over time for family recruitment, to include replacing families.
Finally, in order to support the mandatory nature of the programme for students, it has become apparent the programme needs to sit within a clearly identified academic module, with a clear escalation process for students who may be reluctant to undertake visits. In the roll out of the programme across Kent and Sussex, we have made the new Higher Education Institutions (HEIs) aware of this, and this will be factored within our contract with each site.
 

Sustainability

We hope that the Time for Dementia programme will be adopted by other Higher Education Institutions (HEIs).
A comprehensive dissemination manual will be developed to advise other HEIs on how to deliver a similar programme to try to ensure optimum cost-effectiveness if it is rolled out more widely.

Evaluation (Peer or Academic)

We are evaluating Time for Dementia to assess the impact of the programme on student learning and to understand whether there is any impact on the wellbeing of the families involved. We also wish to understand the experience of those taking part in the programme, so that we can improve the programme over time. The findings from the research study will be used to develop a comprehensive dissemination manual which will be used to advise other HEIs on how to deliver a similar programme.
Students, people with dementia and their carers have been asked to complete measures and take part in interviews and/or focus groups on a yearly basis to assess the impact of the programme. Comparison groups of nursing, paramedic and medical students who are not taking part in the Time for Dementia programme have also been asked to complete annual measures.
Outcomes

The programme has been rolled out to five cohorts of student groups at both the Brighton and Sussex Medical School and the University of Surrey. We hope to establish the programme as a sustainable element of the two university courses, as well as extending it to a further 1600 students across in the region.
Student outcomes
For students, one year follow-up data from the first 2 cohorts of medical, nursing and paramedic students show positive changes in knowledge and attitudes to dementia. Scores improved statistically significantly over the year on the Alzheimer’s Disease Knowledge Scale (n=232, change +1.32, p<0.001), the Approaches to Dementia Questionnaire (n=231, change +1.44, p<0.001), the Dementia Attitudes Scale (n=232, change +5.05, p<0.001), and the Dementia Knowledge Scale (n=203, change +0.66, p<0.001). No statistically significant changes were seen in the Jefferson Empathy Scale (n=230, change -0.17, p=0.80) or the Medical Condition Regard Scale (n=230, change -0.03, p=0.95).

Additionally, three key themes were identified from qualitative interviews and focus groups with the first 4 cohorts of students after 12 months of taking part in the programme. These include Enhanced dementia practice, Skill development and increased awareness of the family perspective of dementia:

Enhanced dementia practice

Students report that they are able to apply the clinical skills which they have learnt from the Time for Dementia programme to hospital settings and feel more prepared for practice. Students report feeling more aware of the need to involve families in care, and the need to check the carer’s wellbeing. They also have recognised the need to adapt hospital procedures for the person with dementia and to be aware of the possible signs and symptoms of undiagnosed memory problems. Students report increased awareness of the possible context behind behaviour and crisis situations. Students report that they plan to utilise life story work and use the ‘this is me tool’ in practice, and to focus on what is important to the person with dementia and to help families to navigate care systems. Finally students have reported that they will pay particular attention to respect and dignity in caring for a person with dementia.
“I’d probably involve families a little bit more…Because families are important…helping the person to remember who they are and who their family are, and they know more about that person than we would ever know” (Nursing student)

Skill development
Students report that they are more aware of things to consider in communicating with families affected by dementia, for example, the importance of speaking separately to family members or using photographs to aid communication with people with more advanced dementia. Students report an improvement in their communication skills with people with dementia, specifically; speaking slower, not changing subjects too quickly, explaining what they are saying differently, checking out understanding, giving one instruction at a time.

“I know that …I’m speaking a bit slower, not very slow, and not changing the subject too quickly…if the person doesn’t understand me, I repeat myself…prompting is really useful…make sure that they (the person with dementia) are on the same page as you”
(medical student)

‘Dementia is a condition which I previously had little exposure to. A year later, I now definitely consider myself to be more empathic, considerate and compassionate. I truly believe that this is a result of the visits, as I was able to understand the importance of both verbal and non-verbal communication.’ (Medical student)

Increased awareness of family perspective (of dementia)
Students report that that they are now more aware of what it is like to have dementia or to support someone with the condition. They report increased awareness of the impact of the illness on carers & time spent caring, as well as the challenges of accessing services. They also recognise the how people can live well with dementia, and recognise hope and positivity in families with dementia.
“Before the visits I had the perception that dementia patients cannot enjoy a good quality of life and that deterioration occurs rather rapidly, the visits however revealed that with sufficient social support it is possible to have a good quality of life.” (Medical Student)
“I’m still trying to put it into my own perspective to say if my life changed by that much how would I feel and what would I expect of someone giving care to me?” (Nursing student)

Family outcomes

For families, we have found that 181 people with dementia 258 carers who have taken part so far, have enjoyed the student visits and the sharing of their experiences and have particularly valued the opportunity to be able to give something back. Additionally, qualitative interviews with 18 families have highlighted the value of making a difference (by improving dementia), enjoyment and continuity for families. For carers, the opportunity to share their experiences has been especially valuable.
“I feel that whatever we do or say, they will learn something from it, from me…” (Person with Dementia)
See more quotes in our Research Magazine: (issue 7 page 5 and 15 and issue 6 page 14) here:
http://www.sussexpartnership.nhs.uk/research-magazine

Outcomes

Quote from Professor Sube Banerjee, Professor of Dementia and Vice Dean, Brighton and Sussex Medical School
“We believe Time for Dementia could support a profound change in professional attitudes to dementia and transform care for patients. We want to help healthcare students understand what it is really like to live with a long term health condition like dementia. They will learn about what it is to be old and ill in society and how people adapt and manage living with serious long term illness over time. This will help build compassion and understanding. It will help equip them for their future careers as health professionals and help us provide better care. This is the most ambitious programme of its type anywhere in the world and we envisage that it will change the way in which healthcare students of the future learn about dementia.”
Quote from Stephanie Daley who leads the study

“We passionately believe that we are fundamentally improving the way in which our future healthcare professionals will work with people with dementia, by helping them to really understand what it is like to live with the condition. We are extremely grateful to all of the families across Sussex and Surrey whose involvement has been critical to the success of Time for Dementia, along with the medical, nursing and paramedic students who have engaged so well in the programme.” Dr Stephanie Daley, Clinical Research Fellow at the Centre for Dementia Studies.
Carer Participant quote:
“It has been a privilege and pleasure to participate in the unique programme ‘Time for Dementia’ and we have found the whole experience very interesting, having had two medical students visit us over a two-year period. We have been able to show them first-hand what it is like to live with the practical and emotional aspects of the condition, for both ”cared for” and carer and they say that they have gained a good insight and understanding of how it has progressed. The students have stated their appreciation of meeting us and that they have been able to enhance their knowledge. This will stand them in good stead when dealing with patients in the future where they will no doubt come across the condition more and more as increasing numbers suffer from it. The students have asked to be kept informed with developments over time and we in turn will follow their careers with much interest. We would strongly recommend participation in the programme to others in a similar situation to ourselves.” Bryan Goodenough – carer for his wife Christine (who has since passed away) and participant in Time for Dementia

Quote from a patient participant and carer
Eddie Wood, 70, was diagnosed with dementia four years ago. He said: “I’ll do anything I can to help bring about changes. Every single person who has dementia is different and they need to be treated that way. When anyone with dementia goes into hospital they are out of their comfort zone. Time for Dementia is so important because if doctors and nurses can have a better understanding of people with dementia and their needs their stay in hospital and their overall treatment is going to be much better.” His wife Mary, 68, added: “I want change, not just for Eddie, but for all people with dementia. We will do all we can to help the health professionals of tomorrow get a better understanding of what living with dementia is like. Our experience of Time for Dementia has been so positive. I’d really encourage other families to get involved and help us make a difference for the future.”

Quote from a student involved in the programme
“The programme has been a valuable learning experience for me as a medical student. I have enjoyed being welcomed into the home of a person who has been diagnosed with dementia and meeting the family that surrounds them. I was given the opportunity to have a journey shared with me from someone with the first signs of dementia, concerned family members, a pathway to a diagnosis and regular updates of disease progression over a two-year period. Meeting the person and their family several times meant a rapport was built between us and each visit revealed more and more about what they were experiencing day-to-day. I gained insight into their personal perspective of the healthcare system, as well as the problems they faced when navigating different health and social care organisations. The programme gives a real reminder that there is an individual behind every diagnosis who has had a wealth of life experiences, relationships, loves and losses and this is something that they can share with you as well as their real-time experience of dementia. They can do this within their place of comfort and on their terms, making it unique. Dementia is a devastating disease, not only to the person diagnosed but also to every person who loves them. A real understanding and insight into what an individual truly faces with this diagnosis, without a longitudinal perspective, would be lost too easily in a fast-paced clinical placement. It’s an unusual opportunity to have protected time for both student and patient to explore and discuss all aspects of living with a diagnosis of dementia, so I feel personally and professionally it has been a rare privilege. My future practice will be better informed and I will not underestimate the impact of a diagnosis of dementia on a person’s life and those around them.” Zoe Cashin, 4th Year Medical Student, Brighton and Sussex Medical School and participant in Time for Dementia
 

Sharing

A short film about the Time for Dementia programme is available on the Sussex Partnership YouTube channel. www.youtube.com/user/SussexPartnershipNHS/videos

Read about Time for Dementia in our Research Magazine (issue 7 page 5 and 15 and issue 6 page 14) here:
http://www.sussexpartnership.nhs.uk/research-magazine

The key long-term goal of the TfD is to influence national dementia education policy and to promote Time for Dementia programme as a new way of building understanding and expertise in dementia and long term conditions for healthcare professionals in their undergraduate training
We have a clear dissemination plan for the programme, and this includes the following activities:
1. Programme overview and research summary materials: To articulate clearly why TfD has been developed, the research being undertaken and what we are aiming to clarify and achieve. This has included: the evaluation of the programme, preliminary findings, programme content and learning. Data from the evaluation has been used to generate a clear and concise summary of the key conclusions from the programme. Key findings has been tailored for each target audience. We have developed effective messages which explain what the research results mean, why they are important, and what action should be taken as a result. For example, we have published articles in the Alzheimer’s Society, Care and Cure magazine, Issue 10, Spring 2017, and the Nursing Times, 2016. (www.nursingtimes.net/careengland/integrating-dementia-care-into-undergraduate-nurse-curricula/7009643)

2. Participant Friendly engagement: Engagement by families and students has been based on communicating the rationale behind the programme, expectations of those involve and on-going family recruitment into the programme. A clear programme of inclusive family events has been established.

3. TfD Stakeholder conference. Two annual inter-disciplinary conferences have been run, which have sought to share learning experiences from the programme.

4. Target audiences We have identified the key target groups who we want to reach with our research and have identified supporting materials and activities. For example, we have carried out presentations to following audiences; the National Dementia Congress (2015 and 2016), the General Medical Council (November 2015), the Royal College of Physicians (May 2017). We are due to present at the RCN Older People’s Conference later this year.

5. TFD manual. All supporting materials (background literature, supporting protocols, student guide, briefing and reflection sessions) needed to carry out the Time for Dementia will be consolidated into a TfD manual. This will be made available free to use at no cost, thus the HEIs and other interested parties will have no financial impediment to its use. They will be made available on our Centre for Dementia Studies website http://www.bsms.ac.uk/research/cds/.

6. Sources/messengers We will use influential spokespersons and TfD family ambassadors to spread our messages, identifying the people or organizations that are viewed as credible with our target audiences. We will work with the press offices within our partner organisations, as well as the wider international dementia and educational research communities. For example, we are planning to present on Time for Dementia at the Alzheimer’s Association International Conference in July 2017.

7. Peer reviewed publications We will publish our data in high impact journals and enable open access to the papers. A publication plan has been developed and nine publications are planned. Our first paper has been published as follows:

Banerjee S, Farina N, Daley S, Grosvenor W, Hughes L, Hebditch M, Mackrell S, Niforooshan R, Wyatt C, de Vries K, Haq I, Wright J, 2017, How do we enhance undergraduate healthcare education in dementia? A review of the role of innovative approaches and development of the Time for Dementia programme, International Journal of Geriatric Psychiatry, 32, 68-75

Is there any other information you would like to add?

I hope we’ve managed to convey how this programme is really working as a partnership to change the way that the medics of the future know how to work and treat people with dementia. Please contact us if you need any more information.

 

 

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