Quality and Excellence in Specialist Dementia Care (QESDC): baseline one-off self-assessment tool and reporting arrangements

Outcome 11. Carer involvement

Carers are involved as agreed in the person with dementia's care plan.

Carers are the primary and most important source of support for people with dementia. The boards provide evidence that they are not only involving carers in patients' care, but are also conscious of the need to take steps to support and protect carers from the pressures of their caring role.

Common practices reported by wards involved in the survey include:

• "You said, we did …" methods in place to respond to carers' comments, ideas and complaints
• admission packs being provided to carers
• visiting times being clearly defined and personally convenient
• general information on dementia and support services being available in ward areas
• carers being invited to multidisciplinary family meetings, enabling them to meet with caregivers and be involved in decision-making (in NHS Western Isles, carers are able to join these meetings via Skype)
• provision of social areas to meet and talk with others (NHS Ayrshire & Arran, for instance, has a well-attended dementia cafe where people with dementia and their carers can socialise and access information, advice and support; and Maple Villa in NHS Lothian hosts "Liz's Lounge" every three months, enabling carers to meet with the charge nurse to discuss in a private setting issues they may not want to talk about in more public forums)
• activity sessions to which carers are encouraged to attend and participate
• promotion of carer/peer support networks and groups (NHS Lanarkshire has a Carer Co-ordinators for Mental Health Team that provides short-term support and directs carers to other appropriate agencies and third-sector services)
• involvement in Patient Focus, Public Involvement activities and on steering and operational groups
• consultation on care planning, particularly for those with welfare proxy powers
• provision of individualised assessments and development of personal care plans
• access to independent advocacy services
• access to training in areas such as recovery and values-based approaches (NHS Tayside), opportunities to participate in sessions on Enhanced Level training (NHS Lothian), and attendance at annual dementia conferences (NHS Borders).

NHS Grampian is in the early stages of implementing the "Triangle of Care" best-practice guidelines on engaging carers and service users in partnership-working with healthcare professionals. The approach builds on and formalises existing work in dementia services, where informal carers often have legal and welfare, as well as caring, roles.

Evidence is emerging in some boards of carers being involved in staff appointments. In NHS Ayrshire & Arran, for instance, people with dementia, carers and third-sector personnel were involved in the recruitment of the Alzheimer Scotland Dementia Nurse Consultant, and a relative of a continuing care patient in the elderly mental health service was involved in recruiting nursing assistants.