Scottish Dementia Working Group - Run by people with dementia

Suggestions for trainers

Background to DVD

The DVD was produced in 2010, with the help of a group of 7 people, all of whom have a diagnosis of dementia. They have all been active members of the Scottish Dementia Working Group (SDWG)

The Working Group was formed in 2002 to be a voice for people with dementia who want to campaign on issues important to them. The Working Group also undertakes activity to increase public awareness of dementia. It is an associated group of Alzheimer Scotland, and two of its members are on the Council of Alzheimer Scotland. Since 2004 it has had funding from Comic Relief to employ a national coordinator. This funding has been matched by financial support from Alzheimer Scotland.

DVD content

A group of SDWG members came together in August 2004 to record their first DVD ‘Listening to the Experts’ which covered the events leading up to diagnosis, the impact and how to help. This second DVD, filmed over 2009, builds on the first by showing how people go about their day to day lives with dementia.  The DVD contains four sections, looking in turn at:

• A life with dementia. Challenges conventional images of someone with dementia and shows people and their families openly discussing the diagnosis.
• Emotional and cognitive impact. How dementia has affected the person and how they cope within their homes and local communities.
• Physical impact. How to be aware of abilities and looking after physical health.
• What can professionals can do to help? How support can be and could have been better.  Food for thought for professionals.

Purpose of DVD

The DVD enables viewers to see what it’s like to live life with dementia from the perspective of people with dementia.

Although it is intended primarily for use with professional staff and volunteers working in dementia care, it can be used effectively in awareness raising with all allied health professionals and the general public.

It can also be used with people recently diagnosed with dementia to help them realise that they are not alone and the importance of keeping as involved and as active as possible. Members are frank about their feelings at diagnosis which may also resonate with others newly diagnosed.

Up until recent years Dementia training principally took into account the perspectives of professionals and carers. An increasing awareness of the need to listen to the voice of people with the condition has now extended to giving people with dementia greater choice and control over their lives. The principles of personalisation emerge in the DVD as it effectively shows individuals taking control of their lives with the help of their natural supports and wider community resources.

In particular we want to raise awareness and understanding of:

• The individual nature of personal experiences
• How people adapt and live with their dementia and their coping strategies for doing so
• The potential and strengths of people with dementia
• How communities can be ‘dementia friendly’
• The difficulties people experience and what professionals can do to make this easier
• How involving and listening to people with dementia can enhance and develop the practice of staff in dementia services

Using the DVD in training

It may be worthwhile explaining that whilst the people featured appear to be in the early stages of dementia, many of them have been living with the condition for a few years.  The DVD does not follow someone’s progression through the illness rather it focuses on the here and now for people and their day to day lives.  There are no professionals in the DVD and only a couple of small clips of carers mainly expressing the importance of not ‘taking over’.

Pause at the end of each section for discussion of the issues raised.

A life with dementia

• Does the DVD challenge how you thought of people with dementia?
• Was it a surprise that the person and families all spoke very openly about the dementia?
• What comments struck you most forcefully?
• Any comments about risk-taking?
• Was there anything positive coming from having dementia?
• Compare any experiences you have, through your work or personally, with the experience conveyed by the DVD. Do you see anything differently after watching the DVD?

Emotional and cognitive impact

• What feelings were described about having dementia?
• What things helped the person to cope?
• What surprised you about what was said?
• Do you agree that the person with dementia ‘has the responsibility to tell others’?
• Did you take note of what Agnes said about her local community?
• What ideas do you have about making your ‘wee bit’ more dementia friendly?
• Trainer to obtain a few of the ‘helpcards’ that people use in the DVD, for participants to look at (Alzheimer Scotland can supply these).

Physical impact

• What physical losses do people describe?
• What advice is given that could make a difference to other people with dementia who may see this DVD?
• Did the information on visual impairment surprise you?  Do you know anyone with dementia who may be affected by this?
• What factors make the dementia seem worse?
• Whilst it does not feature heavily in the DVD it is worth informing participants that fatigue is very common and the people in the DVD do regularly talk about how worn out they can feel as the day goes on as the effort required to function as normally as possible is exhausting.

What can professionals do to help?

• What was said about the experience of being told the diagnosis?
• How could being told the diagnosis be done more sensitively, what suggestions were made that would help?
• Do you agree the workforce is ‘badly equipped’ to cope with dementia?
• What does the DVD say about how people respond to a life-changing diagnosis? Can you imagine your own reactions?
• James describes ‘being the master of the illness’. What do you think of that, is it possible?
• How much support is there in your area designed to help people to live independently within their natural community as their dementia progresses?
• Whilst it does not feature heavily in the DVD it is worth noting that Pat takes a really active role in organising the day to day activities in the care home. Ask relevant participants how residents can increase a sense of control over their life in a care home.
• Also for relevant participants; ask how staff can ensure that residents maintain or create links with social networks and the extended community.
• Another thing worth asking where appropriate is how accessible participants’ information is for people with dementia and their carers who have other disabilities such as being deaf or blind?

Additional points for discussion

• Overall what were the key messages for you from the DVD?
• How much is said about what lies in store in the future?
• Do you have any ideas as to what issues people with dementia would most want to campaign about?
• Having seen the DVD, what are your thoughts on the involvement of people with dementia in discussion about policies, priorities, service planning and practice?

What the DVD doesn’t say

Most of the contributors to the DVD were under or around 65. In the context of dementia services this makes them “young people”! Of the estimated 71,000 people with dementia in Scotland, fewer than 2,000 are under the age of 65.

Whilst it is important to respond to the needs of people who experience early onset dementia, we must also address the needs of people who experience the condition later in life. Some of these will be in the early stages and have the same capacity to respond as the people on the DVD. Others will have reached the later stages of the condition and their needs and capacities will be very different.

• CommunicationAre there techniques which can be used to gather the views of people in the later stages of dementia? How will these differ from the views reflected in the DVD?

• Early diagnosis and social support. Is there more that can be done, through memory groups and clinics to increase the number of people whose diagnosis is made at an early stage? When this happens, what scope exists for enhanced social support which can slow down the onset of the condition?

• Future planning. What can you do early on with people so that they can help think about future care needs themselves in terms of a personalised approach or developing strategies and “tools” that may be effective at times of distress?

Resources

1. Alzheimer Scotland publishes a wide range of literature and information sheets on dementia. Full details are on their website:
   www.alzscot.org
2. The booklet “Don’t make the journey alone” was produced by members of the Scottish Dementia Working Group (this will not be reprinted so a limited number of printed copies are available) . Available for free download from:
   www.alzscot.org/pages/info/dontmake.htm
3. The Dementia Services Development Centre at Stirling University also produces a wide range of materials which will be of value to anyone seeking more in-depth information:
   www.stir.ac.uk/dsdc
4. The Journal of Dementia Care is published six times a year and provides “essential reading for all those working with people with dementia.”
   www.careinfo.org/journal-of-dementia-care.php
5. Membership of SDWG is open to anyone with a diagnosis of dementia. To become a member or find out more about the Scottish Dementia Working Group:
   http://www.sdwg.org.uk/home/join-us/
6. The ‘Palliative Care in Dementia’ course designed and run by Alzheimer Scotland is for Health and Social Care Staff and family and friends of people with dementia.  The course materials acknowledge the importance of person-centred care and show how a palliative care approach enhances quality of life for people with dementia:
   www.alzscot.org/pages/training/palliative-care-course.htm
7. The Dementia Strategy will shape the future development of dementia services across Scotland. It was launched in June 2010 and you can keep up to date on its implementation at:
   www.scotland.gov.uk/Topics/Health/health/mental-health/servicespolicy/Dementia
8. The Charter of Rights aims to empower people with dementia, those who support them and the community as a whole, to ensure their rights are recognised and respected:
   www.dementiarights.org/charter-of-rights/
9. The ‘Making Decisions about Future Treatment’ section on Alzheimer Scotland’s website gives comprehensive guidance to future planning for people with dementia and includes a general template for advance planning and a template for statement of values:
   www.alzscot.org/pages/info/makingdecisions.htm
10. The “Planning Ahead” section in “Dementia – Money and Legal Matters: a Guide” covers a range of issues that a person with dementia might want to consider when planning ahead. This includes information on arranging powers of attorney, advance statements, advanced directives and wills etc:
    www.alzscot.org/pages/info/money-and-legal-matters.htm
11. The DVD ‘Talking about Dementia’. Information on dementia for deaf service users and professionals:
    www.alzscot.org/pages/media/New_DVD_resource_for_deaf_and_hearing_impaired_people.htm and www.deafconnections.co.uk
12. Thomas Pocklington Trust (2009) People with dementia and sight loss: a scoping study of models of care. Research findings available to download from:
    www.pocklington-trust.org.uk/news/news/news_channels/rf25andrf27.htm

Feedback

Alzheimer Scotland and the Scottish Dementia Working Group would be pleased to receive feedback on how useful you have found this DVD and the notes for trainers. We would also welcome your suggestions for improvement.

Contacts:

Barbara Sharp
Development Team
Alzheimer Scotland
81 Oxford Street
Glasgow G5 9EP
0141 418 3935
Bsharp@alzscot.org

Martin Sewell
National Coordinator
Scottish Dementia Working Group
Alzheimer Scotland
81 Oxford Street
Glasgow G5 9EP
0141 418 3939
Msewell@alzscot.org

June 2010