There have been three outputs from the KiP: dementia project. Two dementia cafés and a café for carers of people who have dementia. The project group included five people with dementia, five carers, and eight professionals with a health or social care background.
Dementia cafés
In North West Glasgow the group has set up a dementia café in Drumchapel. This café has run four times since October 2014 and the number of people attending has increased each time. The café has dates confirmed for the next six months. The idea was developed and is being supported by a sub-group including practitioners, carers for people who have dementia and people with dementia. One carer from the North West Glasgow group explained that as a consequence of being involved in this project she ‘can make things happen’. She has therefore been inspired to set up another dementia café in Partick, where a need was also identified for this kind of support.
The number of people who attend each dementia café is approximately 26. The cafés are run by the carers from this project. Their partners and family members who have dementia also attend. Link workers who took part in the project are introducing new people to the cafés each month. A carer described the welcoming atmosphere in the café as like ‘getting a hug when you walk in the place’ (carer) as the atmosphere is ‘so welcoming’, ‘friendly’ and ‘there is good banter’ (person with dementia).
The carers who run the cafés are in the process of developing the infrastructure to support their continuation. Currently, the cafés are being held free of charge in COPE in Drumchapel and the Annex in Partick. These environments have been described by the carers as ‘perfect’ and the people who run these organisation as supportive ‘can’t do enough for us’ (carer). However, the ongoing use of the COPE venue is dependent upon its funding being renewed. Having researched locations, the carers who run these cafés are aware of the difficulties in finding a good, affordable location suitable for people with dementia. Everyone who is involved in these cafés hopes that COPE’s funding will be renewed to enable the continuation of this dementia café.
At the cafés, carers provide tea, coffee, cakes and biscuits and sometimes activities and raffles. Donations are requested to cover tea and coffee. Raffle prizes are donated by people who attend and the money raised from the raffle is donated, for example, to Alzheimer’s Scotland Dementia Dog campaign. Carers are presently seeking advice from NHS Greater Glasgow and Clyde about opening a bank account for the cafés and exploring how they can be supported financially by public services. Dementia link workers employed by the NHS and Alzheimer Scotland are signposting others to the cafés and where appropriate, supporting people to attend. IRISS has gifted £250 to support the expenses of each café.
Drumchapel Dementia cafe flyer
Carers’ cafés
One carers’ café is running monthly in COPE, Drumchapel, North West Glasgow. The café has been running for four months (Dec 2014 – April 2015) a small number of carers, currently around 12, attend. The group is in the process of deciding whether to grow or remain small. This will depend on the needs and preferences of group members.
The café is a safe space to share experiences of caring for a loved one and to support each other. Carers described ‘feeling brighter’ just knowing there is a safe space for them to go and talk to other people ‘who know what you are going through’. Particularly when they have a small family, possibly no children, and do not know anyone else in a similar situation. ‘It gets you out of the house‘ and can be a space that is ‘not all about dementia’. People talk about various topics, and there is a ‘lot of laughter’ as well as some needed and supported tears.
Currently the cafés are being held free of charge, with an optional donation to COPE for use of the room. IRISS has gifted the carers cafe £125 towards the use of the room until the end of 2015. At the cafés, carers provide tea, coffee, cakes and biscuits. Staff from the local carers’ centre who took part in this project are also in contact with the carers who attend the café to offer support, training and care relief when needed.
Group members Eileen and Jane
Contributing to the debate: the value of unpaid care
Some of the experiences of carers involved in the group were also captured in a short video by facilit-e46 for the PPHW.
This brought their lived experience ‘into the room’ as part of a participatory debate: Does Care Get the Value it Deserves’ held on 25 June 2015 at the ALLIANCE’s Citizen Wellbeing Assembly.
This included speakers from Independent Living in Scotland and the Coalition of Care and Support Providers in Scotland (CCPS) and raised a number of issues around identity (self identity and view of others), how we value care in society.
Thanks to all our KiP carers for contributing to this and their continued work and efforts!