Innovation, Technology and Dementia Care: The Technology Integrated Health Management Study

Dr Kieren Egan and Dr Treena Parsons Introduction Technology is all around us. As the saying goes, “necessity is the mother of invention”, and the needs of society continue to be broad yet acute; paradoxically simple and challenging. Technology inventions over the last century have propelled us to an age of rapid transactions, communication and […]


Valuing dementia care: Spare a thought for families, friends and formal carers…

Ann Gallagher, Professor of Ethics and Care Many people have been touched by dementia and there is now much more public awareness regarding its impact on the lives of individuals, families and communities. There remains too little recognition of the efforts made by families, friends and formal carers to enable people with dementia to live […]


RHAPSODY: Tackling the information dilemma relating to young dementia

Dr Bridget Jones, CPsychol, Health Psychologist, RHAPSODY researcher, Surrey Health Economics Centre

Although commonly viewed as a health and social condition related to old age, dementia also strikes younger people when they are leading busy working lives and fulfilling multiple family roles. Receiving a diagnosis of dementia at a young age comes as a shock. The high impact on all the family is heightened by low levels of support and a lack of joined-up information.

Multidisciplinary international team work

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RHAPSODY is an EU Joint Programme Neurodegenerative Disease Research (JPND) project involving multidisciplinary collaborators from eight partner institutions across six countries – France, Germany, the Netherlands, Portugal, Sweden and the United Kingdom. The UK contribution is funded by the ESRC. Led by Professor Alexander Kurz from the Technological University of Munich, the UK team is led by Professor Heather Gage from the University of Surrey. Professor Jan Oyebode from the School of Dementia Studies at the University of Bradford contributes her clinical and qualitative experience to the group.

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Clear aims based on carers’ opinions

The project sets out to improve care and support for people with young onset dementia by considering requirements as described and explained by family carers, who share the process of diagnosis and the experience of living with the condition. Four key aims provide a focus for each phase of the work with the ultimate goal of creating and evaluating an on-line program providing the type of information and support carers need.

1 To evaluate the policy and information environment in the partner countries, including the frameworks for the treatment and care of people with YOD, and information available.

2 To assess the specific information and support needs as expressed by carers.

3 Design an internet-based, multimedia, interactive program for carers.

4 Evaluate the program in France, Germany and the United Kingdom by conducting a pilot study to assess the feasibility of an online course, its suitability and acceptability for carers.

The two first phases of research looked at the information available and investigated the situations family carers face when they find themselves supporting someone close who is diagnosed with dementia before the age of 65 years. Following in-depth interviews in the Netherlands, each country conducted research to understand the local needs of carers.

Learning from real life

Here in the UK, we listened to the opinions of carers at discussion groups in Birmingham and Guildford. Simply coming together to meet others in a similar situation was a revelation for some participants. As experiences were exchanged and individual anecdotes were shared, we began to appreciate the extent of the struggle everyone faced, not only during and after diagnosis but also on an ongoing daily basis. Finding age-appropriate information, dealing with social and health services, and accessing suitable support was a real problem. The same was true across all countries, with a clear need for information about young-onset dementia – explaining symptoms, considering how and where to seek support, and bringing together advice and insights from professionals as well as those who coped with similar situations.

Developing and testing the program

Built on the multidisciplinary experience within the research collaboration team, and grounded in the needs described by the carers, the RHAPSODY program is designed to bring together important information in one resource. It sets out to make the information accessible and to demonstrate ways of coping that may be helpful to carers.

Developed in German, French and English the program offers background information on young onset dementia and provides practical information about where to get help, with links to relevant websites and resources. The seven parts cover themes such as A Medical Perspective on Young Onset Dementia; Dealing with Challenging Behaviour; Family Issues; and How to Get Help.

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There are video case studies to illustrate ways in which some carers cope with activities that may become problematic. Other clips act as reminders about the complicated processes we take for granted when we carry out everyday tasks. Interactive sessions and reflective questions help to provide information, build knowledge and promote confidence. Some parts of the program can be downloaded and printed for off-line use.

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We are grateful to carers who participated in the pilot study and have recently finished testing the RHAPSODY program here in the UK. Participants tried the program over a period of six weeks, evaluating its usefulness and considering the practicalities of using the online course. As well as completing questionnaires to indicate how the program may have helped with caring and coping, participants have provided generous feedback and suggestions.

The next phase: Analysis, results and impact

With data collection complete, the data processing and analysis stage is now underway. The results will inform the future for the RHAPSODY program, from suggestions for content and media styles to indicating likely stages when carers may benefit most from improved information. This user-friendly model of information and support provides an opportunity for raising awareness among organisations working with people with young dementia across Europe.

The RHAPSODY program aims to highlight and meet the needs of carers.

For more information on the RHAPSODY project visit www.rhapsody-project.eu

Dr Bridget Jones b.e.jones@surrey.ac.uk

 

 

Reminiscence with people with Dementia

Treena Parsons, Research Fellow

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Thinking back over past times, remembering people, places and events. Reminiscing. It is something almost everyone does, and yet it is something that can be used as a very powerful tool to connect or reconnect with a person with dementia, by recalling good memories of times gone by.

Whilst undertaking my PhD at Trinity College Dublin, which explored the experience of taking part in reminiscence work from the point of view of people with dementia and facilitators in Ireland, I was fortunate enough to observe and hear about many types of reminiscence work. The data collected from interviews with people with dementia, care workers and family members and from observations showed the benefits and challenges associated with delivering reminiscence work in real-world environments.

In this blog I will be discussing some of the ways in which reminiscence can be used with people with dementia in everyday life, both at home and in care settings. I will be discussing simple reminiscence work as opposed to reminiscence therapy, which is more specialised and may have an element of life review or self- evaluation involved. Simple reminiscence is usually aimed at sharing common memories and encouraging social, educational or recreational objectives. It usually uses open-ended prompts or multi-sensory triggers to stimulate reminiscence on topics likely to be of interest to participants and unlikely to trigger painful memories.

Why Undertake Reminiscence Work?

Reminiscence is associated with many benefits such as increased self-esteem and self-identity, enhanced communication and improved mood and wellbeing but It is also important to remember that as well as being a therapeutic activity, it is an activity which can simply be enjoyed by both the person with dementia and the caregiver (formal or family member/friend) and the value of that should never be underestimated.

How to Undertake Reminiscence Work

Reminiscence is often associated with looking at old photographs but there are many other ways to reminisce.

If you have specific time to put aside, a really pleasurable reminiscence activity can be compiling a life story book together. Life story books can be bought or you can easily compile one yourself, using simple materials such as a loose leaf ring folder, which has the added advantage that you can keep adding to it and can take out parts which a person with dementia decides they no longer want.  The book can become a record of a person’s life.  Some people like to record a life story in a chronological fashion, starting at birth.  Others prefer to concentrate on specific topics such as holidays, Christmas or other celebrations, jobs, favourite foods or films.  The list is endless.  Photographs are frequently included but other items can be used too, such as old school reports, wage slips, pieces of material which have significance (for example material from a favourite dress or curtains).  Take your cue from the person with dementia, it is their book and it is up to them to decide what should or shouldn’t be included.  Compiling a life story book can be an enjoyable activity for both the person with dementia and those who help them put the book together, and can often be a way for different generations to come together on a shared project.  Grandchildren and great grandchildren can help for example and can themselves benefit from learning about a different generation and family history.  But you can also try different ways to compile life story information, for example collages or blogs.

Reminiscence does not have to be done as a specific activity, it does not have to take up much time and can be incorporated into simple, activities of daily life.   Shared activities such as baking, polishing, gardening or folding ironing can all be enjoyable ways of connecting and these activities can be used to prompt reminiscence.  One example I was told of during my PhD studies was a caregiver singing an old familiar song to someone whilst helping them bathe.  A simple way of turning what was sometimes a stressful event into a more pleasant one.

Music is a very useful prompt for reminiscence and favourite songs and hymns are great ways of prompting reminiscence. The lyrics of songs and hymns may be remembered long after other things have been forgotten.  Humour is also a useful prompt with the retelling of old jokes and anecdotes and watching old comedy films, especially those with visual humour, often being enjoyed.

Recently new ways of reminiscing using technology have emerged and the Social Care Institute of Excellence (SCIE) have issued a guide for social care providers on using information and communications technology (ICT) with people with dementia in reminiscence work. In the guide ICT is acknowledged as an important resource for reminiscence work as it can give virtual access to a wide variety of prompts instantly, can easily be individualised and is flexible.

Reminiscence can involve all the senses, so think about things to smell, to see, to taste, things to touch and listen to.

Who should take part in reminiscence?

Most people with dementia enjoy taking part in reminiscence activities, but it is important to remember that not every person with dementia is suited to taking part in reminiscence. Some people are not interested in the past and some have experienced traumatic or distressing events which they may not wish to revisit.  It is important to always take your cue from the person with dementia and if necessary take advice from professionals. Similarly for caregivers, not everyone is suited.

Further information:

There is a growing body of work on reminiscence and the following may be of interest:

Robert Butler, (who founded the US Alzheimer’s Disease Association) was the first person to bring reminiscence for older people to the attention of health professionals and researchers worldwide and his work is still relevant today.

I particularly recommend the work of Faith Gibson, which is accessible and practical and uses a developmental life span perspective. Her book “Reminiscence and Life Story Work” is well worth reading.

The Reminiscence Network Northern Ireland is a good source of information and support and runs training courses.

And of course I would be happy to share my thesis with anyone interested in reading it!

 

How do we enhance undergraduate healthcare education in dementia?

Wendy Grosvenor, Teaching Fellow in Integrated Care (Older Adult)

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Time for Dementia aims to try personalise education by focusing on the experiences of people with dementia, rather than their diagnosis. This innovative project transfers the focus of education of health professionals by putting relationships with families and the heart of understanding what’s really important in care for people living with dementia.

Funded by Health Education England Kent, Surrey and Sussex the 4 year collaborative project involves Brighton and Sussex Medical School (Medical students), University of Surrey (Nursing and Paramedic students), Sussex Partnership and Surrey & Boarders NHS Foundation Trusts and the Alzheimer’s Society. Time for Dementia has been running since November 2014, currently there are 4 cohorts of students (n=741) taking part in the programme, and 370 families involved. This innovative project has won a National Dementia Care Award (2016) and Laing Buisson (2016) award for best dementia training initiative.

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Student feedback demonstrates increased awareness of the family perspective of dementia, increased knowledge of dementia and positive impact on practice – skill development.

“Being able to gain understanding of what it is like living with dementia and to understand the carer/families role and their feeling/experiences”

Adult Nursing Student

 Feedback from people with dementia and their carers included feeling valued, shared learning, making a difference and feeling listened to.

 “The student’s enlighten me…they listen to me. It bought me to life.”

                                                                                                     Participant

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