I have the right to have carers who are well supported and educated about dementia
The Charter of Rights for People with Dementia and their Carers in Scotland states… ( >1)
When this right is respected
People with dementia have the right to health and social care services provided by professionals and staff who have had appropriate training on dementia and human rights to ensure the highest quality of service.
People with dementia and their carers have the right to be provided with accessible information and the support they require in order to enable them to exercise their right to participate in decisions which affect them.
Carers will feel valued and properly supported in their role and will know where to get help if needed.
All health and social care staff will know about and promote the interests of people with dementia.
Carers will be recognised and valued as partners in care and be supported in their role
All service providers will ensure that
Carers are involved in the assessment, planning and review of support, care and treatment for the person with dementia.
Carers are given the opportunity to continue with, or adapt, their caring role if either the circumstances of the person with dementia or their own circumstances change.
Local Authorities and NHS Boards will ensure that
Carers of people who have recently been diagnosed with dementia are given access to educational resources about dementia. ( >22)
Carers are given information about the right to request a carer's assessment and that up-to-date information on carers' support in their local area is available. ( >7)
The carer support plan will include assessment of the financial. emotional and practical support that is required.
Psychological support including peer support is available locally for carers of people with dementia.
Supports available to carers include the provision of short breaks and flexible respite.
Paid care staff
All service providers will ensure that
Health and social care staff have the knowledge and skills they need in relation to their role in supporting people with dementia. ( >14)
Carers of people with dementia are invited to contribute to staff training and development.
Staff receive the appropriate levels of supervision and opportunities to reflect on their practice.
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.