Developing a psychoeducational programme for family caregivers of people living with late stage dementia.

Background: Family caregivers often find it difficult to access information and support in the later stages of dementia. They may have difficulties attending in‐person support groups due to caring responsibilities. If caregivers are able to attend these groups, the information and support is often targeted towards the earlier stages of dementia. Method: An eight session psychoeducational programme was developed in order to enable caregivers to access peer support and information from professionals with expertise relevant to the later stages of dementia. The programme sessions are held over Zoom and include the following topics: sensory stimulation, nutrition diet and swallowing, legal matters, care in the home and care homes, palliative care and pain management, funeral planning and brain donation. Sessions are co‐facilitated by health and social care professionals with relevant expertise, including a speech and language therapist, dietitian, solicitor and palliative care practitioner. Themes and session content have been co‐created through partnership working between facilitators and programme participants. Result: The programme has been completed by four groups of caregivers (n = 26). All participants care for someone living with a rare or young onset form of dementia, and include those caring at home as well as caregivers of people living in a care or nursing home. Participants have reported a number of positive outcomes from attending the programme, with one participant stating: 'Joining this late stage carers group – I was a bit worried about it... it's absolutely one of the best things I could have done. In some respects, I wish I could have joined this earlier'. The programme is currently being evaluated using a time and cost survey to determine ongoing feasibility. Conclusion: There is a need for accurate and timely access to information and support for family caregivers of people living with dementia in the later stages. Online psychoeducational programmes provide the opportunity for caregivers to access both peer and professional support in their own homes. The development of this programme has benefited from ongoing and iterative input from both caregivers and professionals in the dementia support field. [ABSTRACT FROM AUTHOR]