Getting married during my psychiatry placement as a medical student was bound to have affected my knowledge in this area. My psychiatry textbook had intimated dementia was a diagnosis where no help other than placing the person with dementia in an institution was appropriate, and when I first started work in dementia care there were two books, some Alzheimer’s Society leaflets, and little else to give carers. There were no drugs, little support, and certainly no information on “Living well with dementia.” The information superhighway did not exist.
How things have changed! Now every clinical service supports their own website and there are innumerable organisations which provide information and advice on coping with dementia.
So what should we be telling people with dementia and their carers in an acute Trust?
Admission to hospital often marks a significant milestone on the journey when the direction of travel may change. The person with dementia is understandably anxious when in a strange place, but their carer and family are also anxious and often for different reasons. The national CQUINs for dementia recognise this and include a requirement to support carers.
In our acute hospital Trust we already had a good dementia intranet through which staff could access the Alzheimer’s Society and our local carers centre. However, answering carers’ requests and understanding their needs are usually done by junior staff on the wards. Even senior staff will not be aware of all available services and information to provide comprehensive assistance.
As the local dementia lead I had a better idea than most, but couldn’t cope personally with 250 people with a diagnosis of dementia at any one time. I was aware however of the memory cafés operating locally. The ethos of a memory café is of a safe place where people with dementia and their carers can discuss their needs and receive information and support from people who are specialists in the area of care provision and local services. Negotiating the labyrinth of information, as with going through Spaghetti Junction for the first time, is much easier with local guides.
So the idea of a memory café in an acute Trust was born and has been running on a weekly basis for 18 months. After an initial period of reluctance the Alzheimer’s Society enthusiastically supported the service. The café is staffed by two dementia support workers from the Alzheimer’s Society who bring a wealth of experience, leaflets, and other resources. A member of the Trust dementia team is also present. The café is held in a public area between two complex care wards with a high proportion of patients with dementia. Cake and tea are available together with a private area for people who are distressed. We are proactive in approaching people walking through this area and many will stop and request information because of this.
Carers receive an invitation when the cognitive impairment care bundle is started for each patient; the café is advertised in the hospital atrium and also in the hospital newsletter.
There is a steady stream of visitors throughout the two hour café presence. In the first few weeks we were surprised at the number of hospital staff who visited. Many of them were carers in their private lives welcoming the opportunity to obtain information they could not usually access because of their working hours. This led us to develop a connection with the staff wellbeing team so that we could advise on their rights as carers as well.
Carers make up the vast majority of those who now come to seek information and support. Their needs are varied but often focus around the discharge process, understanding continuing healthcare applications, and how to choose a care home.
It has been helpful that much of this support is provided by people who are not Trust staff as they are seen as impartial in this process. Helping people being pressed to identify a suitable care home in a few days to understand that acute Trusts are not making the rules, but trying to interpret national guidance, has been useful in defusing anger. We can use our carer support workers to identify and support people who are most distressed; again, they are impartial members of the team who work for carers support services.
In addition to providing information the Alzheimer’s Society staff may link people into external support groups and will often arrange to visit them at home to continue the care and support. In the first year we saw over 320 attendances at the café, which has also become a space to encourage volunteers, a reception point for Twiddlemuffs, a sampling point for feedback on our services, and most recently a place to provide meaningful activities away from the ward for people with dementia.
Hopefully like marriage, the mutual support provided in the café will allow it to thrive and develop with age, perhaps down unforeseen paths, like my unexpected career in dementia despite my lack of psychiatric knowledge.
Watch BMJ Quality’s short film about the success of a memory café here: