Standards of Care for Dementia in Scotland: Action to support the change programme, Scotland's National Dementia Strategy

I have the right to have carers who are well supported and educated about dementia

Support for a carer

Joan and her husband George moved from Glasgow to a small country town shortly after their retirement. Joan continued to work part time in the local supermarket to supplement their income.

George was diagnosed with dementia soon after their move and was put in touch with Claire, a community psychiatric nurse ( CPN), who visited every month. Joan felt isolated; she had not had the chance yet to make new friends as she was so busy working and looking after George. The CPN put Joan in touch with a local carers support group and referred her to a local counselling service.

Other carers she met told her all about the support that was available locally and what Joan found most helpful was the support of her local community. She was comforted by knowing that people were looking out for her and George. One evening at a meeting of the support group a social worker came along to talk about direct payments and how carers could claim and use these.

With some support from the social worker, Joan used these payments to employ a personal assistant for George a few hours a week, so she could manage her hours at work. It also allowed her to arrange occasional overnight care, so that Joan could visit her friends in Glasgow to catch up and relax.

A lack of support for Jim

Following a lengthy period of time, Alice was diagnosed with a rare type of dementia.

The diagnosis took a long time to be made because other psychiatric and physical illnesses needed first to be excluded.

When the diagnosis was eventually confirmed by a neuropsychiatrist, there was no further information given about support, information or guidance, just a follow up appointment in three months time. Her husband, Jim, described leaving the consultation with his world in absolute tatters and a feeling that he had been left completely alone to deal with it. Jim spent a lot of time on the internet trying to find out more information, much of which he found frightening and conflicting. Jim said he spent the next three months in a daze.

The next appointment only confirmed the diagnosis, but there was a promise made to refer him to the community mental health team for support and advice. When Alice and Jim eventually met with the Consultant Psychiatrist it had been more than six months since diagnosis and they had a 20-minute time slot to ask all the questions and explain the worries they had.

Jim was keen to speak to the doctor or nurse on his own; he did not want Alice to hear his worries about how quickly she was deteriorating but he wasn't given this opportunity.

As well as being the carer for Alice, Jim also had to carry on working full time and support his children, who were finding it difficult to cope too.

Eventually, through a family friend, Jim got in touch with some other carers and he was surprised when he heard about the good support they were receiving from a Community Psychiatric Nurse and the social work department. Jim was angry about the lack of consistency in service provision. He had to seek out and make a fuss to get these services, rather than be helped and supported.

Jim thinks this happened because Alice was younger than most people with dementia and so didn't fit into "the tick box" that services used to decide the care and support that people with dementia and their carers needed. Jim says that he and Alice are individuals who don't fit into the typical picture of dementia and instead of services adapting to their needs, they are expected to adapt to what the service wants to deliver.