The role of carers in supporting people with dementia is of crucial importance. Carers often enable a person with dementia to live well at home throughout their dementia journey. The support of carers can be critical in avoiding or delaying admission to hospital or to other care settings. Above all, carers are the husbands, wives, sons, daughters, brothers, sisters, parents, partners and friends of people with dementia. They share a life of memories together and their ongoing involvement helps the person with dementia to retain their sense of identity and belonging. Carers often describe a sense of loss, feelings of sadness and distress. They can experience confusion, exhaustion, depression and guilt. Your recognition of the struggle carers can have is essential. Your knowledge of how to support carers or signpost them to sources of support is empowering and cannot be underestimated. Testimonies from people with dementia and carers in this section will help you to understand this.

Carers Scotland (2011) estimates that carers save the Scottish Government £10 billion every year on care costs, the cost of a second NHS. Their quality of life should be maintained. Carer Support Plans play an important part in our work, less as tools or assessment events and more to facilitate outcomes-focused conversations with carers.

One of the six National Standards of Care for Dementia in Scotland states:

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

When this right is respected carers, will feel valued, informed and better supported in their role. They will also know where to get help if needed.

Who is a carer?

Caring Together: the Carers Strategy for Scotland 2010-2015 identified key roles for The Scottish Social Services Council (SSSC) and NHS Education for Scotland (NES) in promoting a carer-focused workforce learning agenda. SSSC and NES have developed a set of core principles for working with carers. Titled Equal Partners in Care (EPiC), one of the first requirements was to define what we mean by carers in order to distinguish them from some members of the social services workforce who may also have that title. The definition says:

'A carer is someone who provides unpaid support to a family member or friend. They may care for an older person, someone who is disabled, has a long-term illness, mental health problems or is affected by alcohol or drug misuse. Carers can be any age, from children to older people, and from every community and culture. Some carers may be disabled or have care needs themselves. They may be parents, spouses, grandparents, daughters, brothers, same sex partners, friends or neighbours'.