By Siobhan Gallagher, who is a carer for her father who is living with dementia. She recently joined Dementia NI to help raise the voice of those living with dementia
Tomorrow (Tuesday, June 22) sees the launch of ‘Crowded Isolation & Loneliness – a perspective from carers of people living with Dementia’. The survey report was co-produced by carers here in Northern Ireland, supported by tide (together in dementia everyday). Carers came up with the idea for the survey after conversations during tide carer connection sessions, about their roles as carers and how the isolation and loneliness of being a carer affects them.
Working together the carers, Jean, Judy and myself, created a survey which was rolled out to other carers of those living with dementia across the four nations. Over 100 responses were received. Carers then carried out 29 in-depth interviews, writing them up and reporting back on their findings between March and April.
Many of us carers feel that we are alone and that our experiences are unique. This survey and the results showed that carer experiences across the country were very similar. Carers experienced crowded isolation and loneliness well before the pandemic and will continue to do so once the pandemic is over, as others return to ‘normal’. But the pandemic has made this experience more acute.
These interviews highlighted the common themes that carers of those living with dementia experience regularly. Themes prioritised from the research evidence focused on family, friends, finances and the future; conversation, connection and self-care; grief and guilt; limbo, loss and lockdown; recognition and support systems; the positive aspects of caring and the severe impact on mental health.
This research adds to existing evidence on loneliness and social isolation experienced by carers of people living with dementia. Main findings concluded that family relationships and expectations about caring are a significant factor in how the caring role is experienced. Carers mourned the loss of friendships, social circles and connections to others.
Worry about finances featured as many carers had to reduce or completely give up employment. Fears around the ability to pay for care in the future and potential loss of homes also contributed to financial worries.
Many carers reported on the detrimental impact of caring on their own physical and mental health and the difficulty of taking time to look after their own needs. Some said that the all-consuming role of caring had resulted in the erosion of their own personal identity. Carers experienced a pervasive feeling of guilt, that they were never doing enough or being enough.
The continued stigma around dementia, the lack of recognition and understanding of the condition impacts on services and on the lived experience of carers and those living with the disease. The report has clear recommendations that can help shape future policy in health and social care. As one carer said: ‘carers don’t need pity, they need help’.
We would like you to join us on tomorrow, 10am to 10.45am for the launch of this important piece of work.
Please register using this link: https://www.eventbrite.co.uk/e/crowded-isolation-and-loneliness-caring-for-someone-with-dementia-tickets-15689268925