The person behind the dementia
Life story work and reminiscence are inextricably linked. They both involve focusing on a person’s past and bringing their history to life – and into the present. The greatest benefit of this work is that it lifts a person’s mood – enabling them to talk about the ‘good old days’ and share their experiences of growing up, working, holidays and family get-togethers.
Life story work and reminiscence are increasingly being valued by care providers as a critical way to discover the person behind the dementia. Simple picture and life story books and groundbreaking initiatives are proving invaluable in helping people with dementia reconnect with their lives.
He’s a different man. It has given him something to think about, something to talk about and has given him life back again. This has been the making of him. And it’s good for me because I can relax.The wife of a football fan talks about the transformation in her husband, who has dementia, since he joined Scotland’s Football Reminiscence Project.
What is life story work? Essentially, it involves working with a person with dementia, family members and friends to record key moments of their past and present lives, usually in a scrapbook, photo album or video album. The book or album (which may also record current likes and dislikes and future wishes and aspirations) will play an important role in providing person-centred care and support.
Learning about people’s life stories can take many different forms. Creating a life story book with sections on childhood, teenage years, working life and family life can be enjoyable for the person with dementia and also for their family. Many imaginative life story programmes exist: some use collages, others use pictures, photographs or objects to evoke positive recall of days gone by. Sometimes these special items are placed in a memory box.
It is often possible to find out something simple from the person’s past such as where they lived or what they did for a living. Using this as a starting point, you can then reminisce with them using pictures and objects relating to this part of the person’s life. As the process continues more and more memories will be recovered and new ones will emerge. This helps family, friends and care workers to build up a unique picture of the person – and helps them to communicate with you. As the dementia progresses, life story work can play an increasingly important role in helping to stimulate conversation, especially when meeting the person for the first time.
What is reminiscence work or therapy? It is recalling past events with the help of old photographs, newspaper clippings, videos of old films or familiar items. It can be done on an individual or group basis and by using family or generic pictures or objects from a certain age. For more information, see the Reminiscence feature in the Keeping active and occupied section.
The value of family photographs in reminiscence work is demonstrated in a Dementia Services Development Centre video made in a residential home in Edinburgh. It shows a resident with dementia talking freely and candidly about the past as she looks through a series of old photographs. They include images of her father, who fought in World War One, of her baby son, a dress she made – and an old family car.
Sporting memory projects are great examples of life story and reminiscence work. Two current major initiatives are the Sporting Memories Network and the Football Reminiscence Project.
The Sporting Memories Network is involved in a series of innovative projects across the UK, working with a series of football clubs, charities and commissioning groups and has also worked with care homes across Leeds to test out a new approach to reminiscence therapy.
The empowering nature of life history work is encapsulated in the remarkable story of the late Celtic footballer, William (Bill) Corbett. Bill was a ‘quiet man’ with dementia whose career as a footballer was virtually unknown until he joined a reminiscence group. It emerged that he played for Scotland against England in the 1940s – and played with some of the greatest names that football has ever known, including Bill Shankly, the late Liverpool manager.
The Football Reminiscence Project trains volunteers to spend time with people with dementia who have an interest in football, and is a partnership between Alzheimer Scotland and the Scottish Football Museum. The Football Memories website is a product of Alzheimer Scotland’s pioneering work on the project. On the site, you can hear the wife of a football fan talk about the transformation in her husband, who has dementia, since he joined Scotland’s Football Reminiscence Project:
He’s a different man. It has given him something to think about, something to talk about and has given him life back again. This has been the making of him. And it’s good for me because I can relax.Memory boxes
The small things that are precious and evoke happy memories can play an important role in stimulating the memories of a person with dementia. Keeping the items together in a box – or memory box – will ensure that they are kept safe and can be easily accessed when needed.
Jewellery, small toys or dolls, family photographs, mementoes from the past – perhaps an old cinema, concert or theatre programme or holiday postcards – and tools or other items used in previous jobs or hobbies can be kept in a memory box. An old cassette tape or CD with a person’s favourite music and a favourite perfume or aftershave are useful additions. Depending on the size of the box, there is no limit to what can be included.
A memory box scheme for hospitals has been successfully introduced in South Staffordshire by Age UK. It has given patients, who might otherwise be alone and without visitors, a chance to relive old memories and communicate better. The patients have been given the opportunity to select items from the boxes and sit down and have a chat with an Age UK volunteer. The scheme has helped ease the workload on nurses.
Some people put together memory boards to help rekindle memories – and to remind a person with dementia of important future dates or appointments. The boards are usually mounted on a wall and can include a calendar and important family and holiday pictures that can be changed on a regular basis.
The pictures become a talking point for family members, friends and care staff visiting a person’s home and information (birthdays, important anniversaries and so on) on a calendar can encourage conversations about key people and events and act as a reminder of dates and events to remember.
Music can lift the mood or spirit of a person with dementia – and can help them to remember good times in their lives (for example, when they met someone special or attended a memorable event, such as a concert, play or family celebration).
A favourite tune or song can raise a smile or laugh and can ease anxiety. It can also play a key role in helping family, friends and care workers to engage with the person when communication is difficult or non-existent. Even if the person has not heard a particular song from their teens for many years, the chances are that if they hear it again they will still be able to remember every word and sing along.
Even if it wasn’t a particular favourite, it will evoke memories of a time when the person felt more confident and potent in their life. If you know that song too you also become associated with positive feelings and a sense that together you share something core to that person’s identity.
Unless you have access to someone who knew the person well during their teens and early twenties, you are unlikely to know the songs, the films, the sporting moments and the events that will be well known to them. However, what we do have now is access now to the internet, so this is a great place to start to search for resources and ideas.
Life Story Network
The Life Story Network (LSN) works with a range of partners and individuals to promote the value of using life stories to ‘improve the quality of life and wellbeing of people and communities, particularly those marginalised or made vulnerable through ill health or disability’.
The LSN arranges bespoke training programmes and workshops for private, public and voluntary organisations, and encourages people and organisations’ to become involved in the network. View more information on the LSN website.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- QCF Mapping: The person behing dementia
- Activity: The person behind dementia
- What the research says: Communicating well
Further reading Open
Institute for Research and Innovation in Social Services (2010) Supporting those with dementia: reminiscence therapy and life story work, Insights 4, Glasgow: IRISS.
Mitchell, R. (2007) Understanding the importance of life story work, Skill Starters Booklet 6, Stirling: Dementia Services Development Centre, University of Stirling.
Rio, R. (2009) Connecting through music with people with dementia: a guide for caregivers, London: Jessica Kingsley Publishers.
Schweitzer, P. and Bruce, E. (2008) Remembering yesterday, caring today: Reminiscence in dementia care: A guide to good practice, London: Jessica Kingsley Publishers.
SCIE Dementia resource case study: Reality check? When a person with dementia talks about something that doesn’t exist.
'Switching on a light: an introduction to life story work’: A 2007 DVD developed by the Dementia Services Development Centre, University of Stirling, which shows interviews with practitioners and people with dementia. An accompanying booklet explains how to get started on life story work and has a suggested outline for a training session. Both resources are available to purchase from the Dementia Services Development Centre, University of Stirling.
Useful links Open
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to communicating well with people with dementia: ‘Communicating’ (500) ‘Understanding and supporting a person with dementia’ (524),‘Dementia and the brain’ (456), ‘Changes in behaviour’ (525) and ‘Top tips’.
Communicating with people with dementia
This short video posted on Youtube features Bupa’s dementia specialist, Dr Graham Stokes, talking about communication with people with dementia.
Dementia care: how to deal with the challenges of communication
This 2012 publication was written by Jennifer Roberts, previously the Dementia Lead for the UKHCA.
DemTalk is a free online toolkit giving guidance on communication with people living with dementia. Different versions of the toolkit have been developed for family carers and health and care staff.
Listen, talk, connect: communicating with people living with dementia
This 2014 Care UK guide is aimed at family carers, relatives and friends and covers topics such as ‘Starting a conversation’, ‘Having a conversation’, ‘Making the most of your visit’, ‘The unspoken word’, and ‘Coping with difficult conversations’. The guide includes top tips and practical suggestions from a range of Care UK staff.
Tips for better communication with a person living with dementia
This new factsheet from Dementia UK explains the challenges faced by people with dementia when communicating, sets out helpful suggestions on good communication skills, and describes some common communication dilemmas.
Related pages from this section Open