Dementia Family Caring: Developing personalised strategies to support mental health and wellbeing

Family and informal carers have long made a significant contribution to the care of people living with dementia and continue to be the foundation of dementia care in Scotland.

Family caring can bring positive and rewarding experiences for both care recipient and provider. However, due to the complex and progressive nature of dementia, family caring is often physically exhausting, associated with psychological harms, and loss of wellbeing (Alzheimer Research UK, 2015).

The number of unpaid carers of people living with dementia increased by more than a third during the COVID-19 pandemic (Scottish Government 2020), with many carers doing more and experiencing increasing levels of physical and psychological distress. The disproportionate impact of the COVID-19 pandemic on both people living with dementia and on the levels of stress, trauma and anxiety experienced by family carers is likely to be long-felt.

The need to create opportunities for family carers to develop personalised strategies for managing carer distress has arguably never been greater.

After successfully leading an application for funding to the 2022/23 Queens Nursing Institute for Scotland (QNIS) Catalysts for Change project, I was delighted in my role as an Alzheimer Scotland Dementia Consultant, to have the opportunity to co-design, deliver and evaluate the effectiveness of a six-week health and wellbeing programme for family carers of people living with dementia, to manage feelings of stress and anxiety.

The 12-month project ran from March 2022-March 2023 and was positively received by programme participants. Evaluation outcomes also indicated that the project proved to be an effective means of supporting the mental health and well-being of family carers of people with dementia. 

The project received national recognition at the 2023 Mental Health Nurse Forum for Scotland Awards, where it was announced as the winner of the 'Improving the lives of people with dementia and their family carers' award. The opportunity to showcase the project at the 2023 Alzheimer Europe Conference in Helsinki also enabled Scotland-led work to contribute to a wider international forum of dementia research and improvements aimed at improving outcomes for family carers of people with dementia.

It has also provided new opportunities to network and share learning with colleagues with a shared interest in this area. The positive outcomes from this project have led to the receipt of funding at a local level, which will enable the project to run for a further year. It will also allow for an increased number of family carers of people with dementia to access the programme.  

In sharing this story, I hope to raise the profile and share learning about the mental health and support needs of family carers of people with dementia and the collaborative opportunities that exist to support these. I would like to take this opportunity to say a special thank you to all the family carers and people living with dementia who shared this journey with us.