Background Caring for people with dementia can be an overwhelming experience for carers who often have unmet needs and experience physical, emotional and economic pressures (National Institute for Health and Care Excellence, 2019; World Health Organization, 2019). Any support model should promote open, honest, two-way dialogue to facilitate patient choice at the end-of-life and anticipatory care planning to enable the person with dementia to achieve a good death.
Approximately 1400 people live locally with a dementia diagnosis. Hospice Isle of Man has recognised the need to support people with dementia to live well and die well. Carers and people with dementia often face inequalities in accessing support services. This was identified in a scoping exercise which then resulted in the development of this model of support.
Aims To develop and evaluate a hub and spoke model to support people with dementia and their carers throughout the key transition points of the disease trajectory.
Methods Hub - ten sessions with carers and people with dementia. Spokes - the carers will receive bespoke training and support from the Admiral Nurse Service to reduce carer burnout and distress. The person with dementia will be supported by specially trained staff and volunteers. We aim to enable the person with dementia to remain at home, avoid unnecessary hospital admissions and plan for a good death. Carers will be given tools to help them manage their anticipatory grief and loss, whilst also supporting them to reconnect to society and move forward.
Results The model is due to start in autumn 2021. The evaluation forms will be completed at the start and end of the ten sessions of the programme to gauge impact as well as levels of understanding and to identify areas of further support.
Conclusions The model should help to reduce inequalities of access for carers and people with dementia by providing appropriate and timely support.
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