Published in January Published by: Association for Dementia Studies. Association for Dementia Studies. Institute of Health and Society

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1 Published in January 2011 Published by: Association for Dementia Studies Association for Dementia Studies Institute of Health and Society University of Worcester Henwick Grove Worcester WR2 6AJ Tel no: Association for Dementia Studies produced for the Alzheimer s Society Page 1

2 Association for Dementia Studies produced for the Alzheimer s Society Page 2

3 FINAL REPORT WORCESTERSHIRE DEMENTIA FORUM FOWNES HOTEL, WORCESTER THURSDAY 9TH DECEMBER 2010 Association for Dementia Studies produced for the Alzheimer s Society Page 3

4 CONTENTS INTRODUCTION... 5 EXECUTIVE SUMMARY... 6 THE FORUM... 8 SECTION 1: LIVING WELL WITH DEMENTIA MEANS Themes with examples arising from each of the group discussions on Living Well with Dementia Group 1: Living Well With Dementia Means Group 2: Living Well with Dementia Means Group 3: Living Well with Dementia Means Group 4: Living Well with Dementia Means SECTION 2: THE SUPPORT AND INFORMATION I/ WE NEED TO LIVE WELL WITH DEMENTIA IS SECTION 3: A HOPEFUL FUTURE MEANS CONCLUSION Association for Dementia Studies produced for the Alzheimer s Society Page 4

5 INTRODUCTION During 2010, discussions took place to identify how to ensure that progress achieved as a result of the National Dementia Strategy was maintained. Dementia Action Alliance was formed as a result of these discussions and in October 2010, a National Dementia Declaration was developed and signed by over 40 organisations. The Alzheimer s Society was one of the signatories to this declaration, and identified in their action plan that: We will develop 150 local community dementia forums which will bring together people with dementia, carers, health and social care professionals and others to understand the local experience of people with dementia and work out solutions This report represents the results of the first Dementia Forum to be held in Worcestershire, on December 9 th People living with dementia, their Families and their supporters attended this event. We are most grateful for the considerable, effort, time and energy given by the people who took part. Association for Dementia Studies produced for the Alzheimer s Society Page 5

6 EXECUTIVE SUMMARY The first Dementia Forum was held in Worcestershire, on December 9 th People living with dementia, their Families and their Supporters attended this event. We are most grateful for the considerable, effort, time and energy given by the people who took part The event created opportunities to gain people s views on 4 main themes: Living well with dementia means... The support I/ we need to live well with dementia is... The information I/ we need to live well with dementia is... A hopeful future means... A creative approach was used to addressing these topics. Participants worked in small groups and were encouraged to create a picture using both images, pens, post-it notes and words, to represent their views. The results were divided into 3 sections. Section 1: Living Well with Dementia The results reflected the discussions and pictures developed about living well with dementia. The themes identified by participants included: Choice Relationships Help Time Activities Remember Me Hope Memories Being Together Information New Skills Adapting and Coping Social Contacts Having a Purpose Independence Having a Purpose Education Loss Acceptance Positive Attitudes Association for Dementia Studies produced for the Alzheimer s Society Page 6

7 Section 2: The information and support I / We need This section reflects the group work discussions related to the information and support that participants identified they need. Four main areas were identified as needing attention: 1. Information and Education For example: A how to guide on what to expect and strategies to try 2. Service Provision For example: Peer support, someone who knows 3. Professional Involvement For example: An opportunity to get therapy so that the person can come to terms with their condition and diagnosis 4. Meaningful Activity and Occupation For example: Social Groups with added spin off value (i.e. walking) Section 3: A Hopeful Future The discussions highlighted 3 main areas concerning a hopeful future: 1. Hopes for services, For example: A regular professional visitor 2. Hopes for a better community and government For example: Education of the public to greater awareness so we are not shunned 3. Hopes for themselves. For example: To feel you are still useful Overall the event was considered to be a significant success. We would like to extend our thanks to all who participated, giving their, time, energy and commitment. Association for Dementia Studies produced for the Alzheimer s Society Page 7

8 THE FORUM The forum was an excellent opportunity to gain the perspectives of people living with dementia and their families and supporters living in Worcestershire. The intention was to create opportunities to gain people s views on 4 main themes: Living well with dementia means... The support I/ we need to live well with dementia is... The information I/ we need to live well with dementia is... A hopeful future means... It was however, incumbent on those facilitating the event to enable all who attended to contribute and express their views, and for those views to be heard. In order to achieve this we chose to use a creative approach to addressing these themes. Participants on the day worked in small groups and were encouraged to create a collage using both images, pens, post-it notes and words, to represent their views. Ultimately, the participants involved developed a collage around the theme of living with dementia. Following this, groups discussed and explored the 3 other themes, with issues of concern and hopes and desires naturally progressing out of this initial collage. This report reflects the importance of the contributions made by participants, and is structured into 3 sections, Section 1: Living Well with Dementia This section reflects the discussions and collage building relating to living well with dementia. The first two pages represent a summary of the themes identified by participants when considering this topic, with examples from each group to illustrate this theme. The collages and Association for Dementia Studies produced for the Alzheimer s Society Page 8

9 notes made by each group are presented in full to allow the reader of this report to understand the detailed perspectives being expressed. Section 2: The information and support I / We need This section reflects the group work discussions related to the information and support that participants identified they need. This has been grouped into 4 tables reflecting 4 major themes, Information and Education, Service Provision, Professional Involvement and Meaningful Activity and Occupation. Section 3: A Hopeful Future This final section has 3 diagrammatical representations of the participants perspectives on what a hopeful future means to them. Their comments have been grouped into those which relate to their hopes for services, those which relate to their hopes for a better community and government and finally those which relate to themselves. Association for Dementia Studies produced for the Alzheimer s Society Page 9

10 SECTION 1: LIVING WELL WITH DEMENTIA MEANS... Association for Dementia Studies produced for the Alzheimer s Society Page 10

11 Themes with examples arising from each of the group discussions on Living Well with Dementia Theme Group 1 Group 2 Group 3 Group 4 Choice When to let people Encourage person in when to shut but don t take over them out Relationships Foundations, love family, support Brought us closer together, camaraderie Recognising when to accept help Planning in advance Ensuring you keep outside interests Association for Dementia Studies produced for the Alzheimer s Society Page 11 Fun for person and carer together Help Signposting, information Help to transport to day centre Time Lack of time, too Enjoy life much to do! Activities Keeping up Travel, holidays hobbies Remember me Remembering Memory box, who we were objects photos before video Hope Beacon of light at the end of the tunnel Memories Memory book, Memory box, roles have objects photos changed video Being together Companionship Someone to talk to Cuddles Can dry up, friendships Peer support

12 Theme of Accept Adjust Adapt Coping Group 1 Group 2 Group 3 Group 4 Adapting and Support is vital Developing Something to look Awareness is Coping creative strategies forward to important Independence Garage and car, Do things Independence being mobile independently Loss Losing activities used to do Not feeling part it Information Books and Access to the right Understood technology information Social Contact Social clubs Having a normal conversation Peer support Having a purpose Keeping busy and fulfilled To continue to contribute Pets, something to look after cuddle Acceptance Finding alternative ways of doing Opportunity to retire early things you enjoy New Skills Time and date and When to accept reminders help Education Technology and Training and Knowledge the internet education for carer Positive attitude Communication and opportunities Learning to cope No worry, fun Association for Dementia Studies produced for the Alzheimer s Society Page 12

13 Group 1: Living Well With Dementia Means... Association for Dementia Studies produced for the Alzheimer s Society Page 13

14 Association for Dementia Studies produced for the Alzheimer s Society Page 14

15 Group 2: Living Well with Dementia Means... Association for Dementia Studies produced for the Alzheimer s Society Page 15

16 Association for Dementia Studies produced for the Alzheimer s Society Page 16

17 Group 3: Living Well with Dementia Means... Association for Dementia Studies produced for the Alzheimer s Society Page 17

18 Group 4: Living Well with Dementia Means... Association for Dementia Studies produced for the Alzheimer s Society Page 18

19 Association for Dementia Studies produced for the Alzheimer s Society Page 19

20 SECTION 2: THE SUPPORT AND INFORMATION I/ WE NEED TO LIVE WELL WITH DEMENTIA IS... Association for Dementia Studies produced for the Alzheimer s Society Page 20

21 The support and information I/ we need to live well with dementia is... Information/ Education Help with claiming benefits, dealing with pension How to access services, what is available Training for the carer (4), classes or home visits How To guide on what to expect and strategies to try Financial advice joint accounts etc. Recognising frustrations and dealing with them General idea of what stages are to the disease How to cope with challenging behaviour What to expect for myself as a person with dementia Information on diagnosis Your rights & responsibilities as a carer How to help you maintain relationships with family and friends What is likely to happen? Differences between types of dementia Are people told what kind they have and how this may manifest You can be told too much which could help you to feel written off Have you got any questions? Don t know what questions are? Tell us what questions we should be asking? What medication is available it can make it worse What can we do to help? How do we know? People deny their diagnosis Info I need to live well & cope with experience of dementia: o Who tells you? o Diagnosis home? o What do you get told? o What support is needed? o When do you need information? Can t predict & plan with dementia unlike other illnesses On line courses to train carers on A.S. website Association for Dementia Studies produced for the Alzheimer s Society Page 21

22 Service Provision Peer support, someone who knows Support Family, spouses, professionals, GPs Dementia adviser, early intervention service, respite care, memory clinic, day centres, groups, cafes, incontinence nurse, CMHT, admiral nurses Isolation a big problem. Carer coming to home taking out on trips. (Assistive) technology easy to use telephones, TV controllers, pill boxes Support for people without carers/people who care How to access services/what is available Dementia is treated as social care need not a health need & until it is the is not there to support people Difficult to get to classes & get out. It is a vicious circle Specialist places for holidays Help with holidays Live in carer! Professional Involvement More input from the professionals Someone to talk to for the carer about their worries about the future An opportunity to get therapy so that the person can come to terms with their condition and diagnosis Learning to accept the changes that will come How to deal with the guilt Support Family, spouses, professionals, GPs Who doesn t matter who tells you as long as they can signpost you. Psychiatrist or GP, but someone who knows. Someone come to the home & tell you what s on offer Continuity same people involved Want trained/experienced staff, at times to suit person and carer not to suit agency Meaningful Activity and Occupation Activation of Skype to contact friends, family Social groups with added spin off value (i.e. walking) Association for Dementia Studies produced for the Alzheimer s Society Page 22

23 SECTION 3: A HOPEFUL FUTURE MEANS... Association for Dementia Studies produced for the Alzheimer s Society Page 23

24 More respite care homes Regular Professional visitor Information given in a considerate and knowledgeable way Someone to contact me, For my mum to be safe and looked after Choice 24hr helpline A Hopeful Future Means... Services that provide Adequate Services Options for treatment Good respite care for one s loved one Association for Dementia Studies produced for the Alzheimer s Society Page 24

25 No stigma Decent wages for carers More inspection of care homes Government recognition and understanding of what dementia is and what it means A Hopeful Future Means... That there will be More young people trained in dementia care More funding for research No need to worry about paying for long term care Education of the public to greater awareness so we are not shunned Association for Dementia Studies produced for the Alzheimer s Society Page 25

26 Retain contact with family and friends Finding a source of good advice To feel you are still useful Knowledge Continue with outside interests, A Hopeful Future For Me Means... Good physical health to keep us walking Retain skills and independence Association for Dementia Studies produced for the Alzheimer s Society Page 26

27 CONCLUSION In conclusion, the verbal feedback from participants suggested that they found the forum to be a meaningful opportunity to share perspectives, to express their views and to contribute to the wider development of services and support for people living with dementia and their families and supporters within Worcestershire. Some expressed the view that this was meaningful precisely because it was possible to share perspectives with others who understood their concerns and experiences. The collage activity seemed to be a successful medium for expression for many of the participants. As you can see from the final products, the opportunity to use a variety of means of self-expression was used by many. A significant number of the participants expressed the desire to be involved in future events such as this. It is also worth noting that the event appeared to create opportunities to share contact details and begin to build new relationships and friendships. The final comments should rightly go to the participants who gave their feedback: Feeling that I could help other people in the future by my views and ideas (i.e. shaping policy implementation) It s been really nice to talk to other people who are going through the same Best bit was having facilitators on the table to listen and give lots of help with thoughts [Would be good to have] GP presence, to listen and participate Association for Dementia Studies produced for the Alzheimer s Society Page 27

28 Report compiled and facilitated by: Jenny La Fontaine Senior Lecturer Association for Dementia Studies University of Worcester Association for Dementia Studies produced for the Alzheimer s Society Page 28

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