Dementia Friendly Dunbar: Community Event Report



TALKING ABOUT DEMENTIA – 30th May 2015 Feedback report

A small, but growing group of people, who have all been touched by the effects of dementia on our friends, family, clients and work colleagues, were persuaded this year that there was a real need for action to improve supports in Dunbar and our wider ward. Supported by Community Councils, Dementia Friendly Dunbar held its first event on 30th May.

This focused on three things.

1. Giving information to anybody and everybody who wanted to know more about dementia and its impacts.

2. Giving opportunities for support and information to families and carers who are experiencing dementia in any of its stages.

3. Finding out what our community needs, wants and can offer in the way of supports and resources for those affected by the impacts of dementia.

We were delighted that such was the support for the event that there were 30 services with stalls offering a range of information from creating a musical playlist to counselling, personal alarms to emergency services, day services to advocacy, health and wellbeing to legal services. Some services offered presentations, others interactive information. We did not restrict ourselves to the hall, where the stalls were, as we had not one but two buses out in the car park – the Alzheimer bus and Handicabs. There was, of course, a pop-up cafe with extremely tasty goodies.

We asked you to ‘Please come and help to make a difference’ and you did – over 50 people turned up. We were delighted. There was a real buzz in the room. In addition to the diverse range of service providers for you to talk with, get information from and share your experiences with, there were opportunities for you to feedback to us through our survey and ‘Talking Wall’. Thank you to everyone, members of the community and service providers, who did. We were struck by your willingness to share your knowledge and understanding of dementia and by your willingness to learn. Your enthusiasm for the day really encouraged us.

We would also like to thank all the GPs who completed a questionnaire and those who collated the results (Appendix 2). We believe that your openness Dementia Friendly Dunbar 2 and honesty offers a real platform for us all to work together to make Dunbar a truly dementia friendly town. What you, community attendees and service providers, told us – 33 of you completed our questionnaire and many of you put your comments on our Talking Wall.

We have collated all of this information and would like to share with you the key findings. You told us what you think about dementia.

The majority of those of you who responded do not believe that dementia is normal (67%) and do not agree that people know what to do if they think that they have dementia (78%). Many of you (39%) do not agree that it is easy to get a diagnosis of dementia. You have differing experiences of the health care system – some do not feel listened to (24%) and some do (18%). Many do not feel that confidentiality is a barrier to you being able to discuss a family member with a professional (42%). Many of you believe that drugs can have a positive impact and help people with dementia (39%).

You told us what you think about care. Your view is that care at home can be very difficult to get (45%) and few agree it is free (6%), Everyone else disagrees, does not know or has no opinion either way. Despite this you feel very strongly that people should live at home (82%) and, if this is not possible, in a care home (33%). The 100%+ response to these questions reflects that many of you are aware that there may be situations when living at home is no longer an option. There was huge strength of feeling about hospital care, a feeling that this is not a good place for people with dementia(82%) and that people being ‘locked up’ for their own safety up is simply not unacceptable (91% ).

You told us what you think about creating a dementia friendly Dunbar. Key themes for future action emerged including : • meeting the needs of carers, • greater involvement of volunteers, • more social and other activities, • more sustainable services, • improved transport and 3 • greater awareness across our community. Your views and those of local GPs (Appendix 2) were, in many respects, similar. Amongst the things that you told us that you would like to see for carers are a range of practical and emotional supports including someone to talk to, increased and improved local respite and more financial support.

You highlighted that there are many periods when support is needed and that it is not just older people who suffer; these include at the time of diagnosis and when preparing for and coping with the death of the loved one with dementia. Carers can suffer overload, feel that they are just left to get on with it when what they need, over and above tangible support, is compassion and understanding.

You would like to see more volunteers who are offered training and are able to undertake a range of roles including offering support to attend appointments and offering respite. Conclusions and the future As this day evidenced, there are a significant number of services which can and do offer support to those with dementia and their carers. We hope that you learned about something new at the event. That being said there are serious gaps in provision and these need to be addressed as a matter of urgency.

You reminded us that we must work to ensure that services already there are sustainable and we maximise the use of them, for example: Belhaven Hospital – ‘use it or loose it’; Dunbar Day Centre which needs improved funding and greater involvement of volunteers both operationally and on their Board.

We need to continue to work on improving transport; the presence of Handicabs helped raise awareness as to the resources that are already there. We need to develop social networks and stimulating activities for people with dementia and their carers. And we need to raise awareness about dementia in our communities, in our services and in our families. It was striking that this was the single biggest factor that was stated as one that would provide the biggest improvement in the lives of people with dementia- better knowledge in our communities, families and care staff, this alongside greater public understanding.

We were struck by the immense knowledge that very many of you have and the shared learning that would be possible if there were increased opportunities to work together to make changes. 4 So where to now? Those of us who volunteered to pull together this event are totally committed to taking things forward. We recognise that we must do this responsibly and in a measured way. There is little value in reacting, starting things up and then letting them fall away. No one is served well by this and very quickly people stop believing that things will change for the better.

Step one We plan to:

1. Approach key organisations working in East Lothian to help us take things forward so that we may implement real change. For example by developing a range of respite services and a comprehensive volunteer service. Such things will only come with significant resourcing including funding and personnel to make it happen – we cannot do this alone.

2. Develop and maintain engagement with and involvement in Dementia Friendly East Lothian to support the development of sustainable services and to ensure that future funding needs are addressed

3. Work with Dunbar Library, Dunbar Day Centre and Sustaining Dunbar. Who else is key, in this do you think?

4. Plan a winter programme of speakers and activities – again we will be speaking to organisations working in East Lothian to support us with this. We hope that this will help raise awareness, offer activities and offer an opportunity to bring people together to look at issues such as transport. What would you like to see in such a programme?

5. Within the year we will hold another Dementia Friendly Dunbar event to report back on what has happened since this event, to again provide information and to offer a forum to continue this conversation. Would you like to see a similar event becoming an annual fixture or do you have other ideas? Would you like this event to have a wider focus than dementia? and finally…

Thank you for all your feedback and for telling us that this was ‘a brilliant start’. We were deeply touched by the trust that so many of you placed in us by sharing your personal experiences. This is why it matters and why we are determined to work together to make Dunbar a truly Dementia Friendly town. We would welcome your feedback and your ongoing involvement with Dementia Friendly Dunbar.




The event was organised by volunteers and supporters, including: Joan Johnson, Frances Rollinson, Jo McNamara, Lorna Bunney, Amanda Levitt, Pippa Swan and Angela Lange.

The following groups contributed to the day, either in person or by offering information: Alzheimer’s Scotland + Bus Handicabs Age Scotland EARS (Advocacy) ELC Adult Wellbeing Team Paris Steele/Lawyer Carers of East Lothian Dunbar Day Centre Training to Care IT Support – Click Community Alarm Service Community Police Fire Service Police Service Handicabs RVS Leuchie House Lammermuir House Changes Community Health Project Dunbar Community Shed Living it Up Strive Aging Well Dunbar Library (Dementia Hub) Playlist for Life Sustaining Dunbar Crossreach Counselling Hearts and Minds (Elderflowers) EL Adult Community Mental Health Team Health in Mind Cranial masseuse Podiatrist Dentist

The following additional resources were provided by local volunteers: Dementia Café Talking Wall Town Index + Map – Directory of Dementia Friendly Sites Old Photos/Dunbar History Quiz (with thanks to Dunbar and District History Soc) The following services were interested in participating but were unable to attend: MECOPP (Black and Ethnic Carers) Citizens’ Advice Bureau Local Pharmacies 6 Appendix 2 DUNBAR MEDICAL PRACTICE STAFF – MEETING FEEDBACK Prior to the Dementia Friendly Dunbar Event a meeting was held with Dunbar Medical Practice General Practitioners and staff.

The agenda was determined by two members of the DFD committee who provided information on the aims and objectives of the DFD event and a questionnaire was tabled to focus the discussion. The questionnaire covered all aspects of services available to patients with Dementia including Respite Care, Referral Systems, Education and Training and Extended Primary Care input. At the end of the meeting it was agreed that the questionnaire would be left with the practice to allow staff unable to attend the meeting to contribute their individual comments. The responses to the questions were collated by one of the GPs and collected at the Medical Centre. The collated responses provided a wealth of information, summarised as follows: Referral system works well with clear referral pathways of care to memory clinic at Roodlands Hospital as well as blood screening and mental state examinations. Respite sevices improving but not great as it is often provided outwith Dunbar CPN provision is limited Day care services has slow turnaround to assess people Transport to the Day Centre is often an issue Priorities to improve Dementia Care included More people to sit with the patient to allow carers some time off Carers support group with access to practical support e.g respite Quicker input from social work department to avert crises.

7 Appendix 3 DUNBAR LIBRARY – BLEACHINGFIELD CENTRE Dunbar Library was keen to be a part of Dementia Friendly Dunbar and quickly established a ‘hub’ where members of the public can gain information on Dementia and Alzheimer’s related conditions. As well as stocking a selection of information leaflets, the Library holds an extensive stock of both non-fiction and fiction titles. A Dementia reading list of all titles held within East Lothian libraries has also been created. Four lovely Memory Boxes were donated to the Library by the Rotary Club of Dunbar (one of these was subsequently passed on to the Dunbar Day Centre). In addition to this, a Dementia Carers’ Support Group is held in Dunbar Library each Thursday between 6-7 pm. The group currently comprises of carers, people with Dementia and volunteers keen to offer their support. There is also beginning to be a crossover within other groups in the Library, e.g. a member of the Library Craft Group recently joined the group for an evening to outline her experiences of caring for her husband and dealing with his eventual admission to a care home; several members of the same craft group have started to knit ‘Twiddlemuffs’ – beautifully created comfort muffs which are colourful and tactile. These will be distributed to nursing homes in East Lothian. Members from both of the above groups recently attended a wonderful evening theatre performance held within the Library – it was heartening to see a carer and his wife, who has Dementia, sit together as part of the audience. Jo McNamara has extended a kind invitation to members of the Carers’ Group to join her ‘Wednesday Afternoon Club’ on fun days out. Jo has also initiated a meeting with The North Lights Art Group who would like to work on a project with the Carers’ Group. Hannah Lavery, East Lothian Libraries’ Reader in Residence is also keen to work with the group – all very exciting and progressive. The challenge now is to promote the group within the community, welcome new members, raise awareness of the condition and how we can help those affected by it.

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