The project was set up in response to a local need and with support from a grant from St James Place Foundation Trust, which enabled a project lead to be employed for one year, to manage the development, implementation and evaluation of the programme.
Following a review of the literature, local services and needs and the wellbeing services already offered by the hospice, a structured support programme for carers of people with dementia was developed.
The aim of the programme is to help carers learn more about living with dementia, develop resilience, enhance their own coping strategies and develop new ones, share experiences, have some respite and gain peer support from others in similar circumstances.
The structured programme is delivered over an eight-week period at the Sunflower Centre (our purpose-built outpatient and day facility) on Wednesday afternoons. We have facilities to accommodate ten carers and ten people with dementia at each session.
There has been no need to advertise the service – word of mouth is working very well. We have an open referral system in operation and a number of carers have self-referred.
Both programmes to date have been oversubscribed. Crises have occurred along the way with some people with dementia being admitted into care homes and hospitals in emergency situations. It is accepted and acknowledged dementia is an unpredictable disease to manage and these situations will occur along our journey.
Dementia buddies
If someone with dementia cannot (or does not want to) be left alone and it is problematic for carers to find someone to look after/be with them, carers are often unable to attend events, leading to social isolation, increasing stress and withdrawal for both.
In order to counter this problem, carers are able to bring the person with dementia to the Sunflower Centre with them.
If we are able to support and occupy the person with dementia while carers attend the information giving sessions and engage in peer support, this helps them both.
In order to help with this aim, we have recruited a number of ‘dementia buddies’. These volunteers are able to occupy and support the person with dementia while carers attended the wellbeing programme.
Our ten volunteer buddies were recruited from the existing hospice volunteer pool and an appeal via local press. They all have personal experience of dementia and have attended a one-day dementia awareness training session provided by the Alzheimer’s Society, which included safeguarding information.
We have enough buddies to be able to offer one-to-one support to people with dementia if that is what is required. Sunflower Centre staff also support the programme and are available during the sessions.
What difference have we made?
All carers completing the first eight-week programme identified a positive change in the problems identified at the beginning and to their wellbeing.
Changes to wellbeing were measured using the MYCaW tool. This tool is familiar to the Sunflower Centre and will continue to be used as a way of measuring outcomes along with a detailed questionnaire focused on programme content.
No formal measure has been used to date for those with dementia, however carers are reporting changes in their wellbeing. One carer reported memories of her mother singing when she was happy; she had not heard her sing for many years but following attendance at the Wednesday afternoon session she sang all the way home in the car.
Carers have received guidance on navigating systems and, most importantly, had the opportunity to meet others in similar situations to them and gain peer support and develop new friendships.
They have also initiated difficult conversations following the ‘living well, dying well’ sessions and reviewed their circumstances and plans, been referred for carer assessments and engaged in counselling and complementary therapy services here at the hospice.
Referrals to community based services have also been made for assessment and support for the person with dementia.
We have retained all of the dementia buddies recruited, with positive feedback from them on their role. Confidence in themselves and their role has observably grown over the programmes.
Working with people with dementia and their carers was a new challenge for the Sunflower Centre staff. Their confidence in themselves and their role has also grown; having a project lead was identified as helping them immensely.
Plans for the future
We have run the eight-week programme twice so far, with a further two planned for the year.
Ideally we would like to offer the programme on three occasions during the year but, due to number of referrals received, this may have to increase to meet need and demand. (We have had a total of 47 referrals to the programme since September 2015.)
We plan to continue the programme after the initial year, with the service and volunteers being managed by the Sunflower Centre.
Funding is being applied for to retain the project lead to develop the dementia buddy role further and move this out into the community. Collaborators for this new project have been identified and include Age UK and the Methodist Homes Association.
In between the eight-week programmes, the Sunflower Centre will offer an eight-week neurological conditions day on Wednesdays. People with dementia who have attended the carer wellbeing programme will be eligible to attend these days if they wish, enabling further respite for carers. Buddies may also support this day if their time allows. This will result in a total of 16 weeks support from the Sunflower Centre for those people with dementia who attend the neurological conditions day.
We are aware we have excluded certain groups (younger carers and those in employment) running the programme when we do. Alternative, days and times are being considered.
Jacqueline Crowther is project lead of the dementia buddy volunteer programme, Helen Knight is clinical and operations director at East Cheshire Hospice, Sandra Jones is manager of the Sunflower Centre at East Cheshire Hospice, and Jo Hawkins is operations manager: Cheshire and St. Helens, Alzheimer’s Society.
For further information, email Jacqueline Crowther (jcrowther@echospice.org.uk) or Sandra Jones (sjones@echospice.org.uk)
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