In this blog post, written especially for Mental Health Awareness Week, Ghazal Mazloumi shares the experiences of caregivers, through her work with Trent Dementia.

Sad, lonely and interesting

This was the phrase used by a family caregiver who attended one of our events recently. They described the experience of supporting a partner with a dementia diagnosis. It felt like a good title for this piece as it tries to briefly point to the incredible resilience of those affected by dementia, their creativity in finding solutions for challenges and adapting. In addition, the stressful, challenging and often lonely experience of those who support their loved ones living with dementia.

Trent Dementia charity supports peer support groups for people affected by dementia. We have regular day trips, organise walks, visit National Trust sites, and have casual chats with people affected by dementia about life’s ups and downs. Throughout the pandemic we offered three online groups every week, speaking with people about their lives when they often went back to an empty room. This work has highlighted the isolation people are experiencing in a visceral way. 

Recently, we went on a trip* together to a walled garden in Lincolnshire. Tea, coffee, cake and, of course, sandwiches were served. It was a bit chilly, but after having some hot drink, the marquee felt cosy, and people started talking about how it felt to be affected by dementia. People repeatedly tell us that meeting face-to-face, in person or online, and recognising that others are having similar experiences is the most helpful antidote to loneliness and isolation. It is important to remember that no-one has all the answers. Dementia is unpredictable, but human connection and kindness is vital for us all.

It was interesting to see that although the family caregivers were dealing with stressful situations themselves, they were ready to help others in the group willingly and so lovingly. Alzheimer’s Research UK (2015) mentions the sacrifices family caregivers make of their personal well-being and of having a social life. Alzheimer Scotland (2018) reports that two out of three people living with dementia have lost their friends after diagnosis. This experience is echoed by the people we have supported over the past few years: people feeling shocked that friends and family withdraw, feeling lonely and isolated as their worlds shrink. As Dementia UK (2018) explains, there are misconceptions around getting dementia diagnosis.

One of our family caregivers wisely said that, as a caregiver, you need to be proactive; you need to go to places and ask questions. The information is hard to find, especially up-to-date recommendations.  As NHS (2021) explains, “caring for someone with dementia can be challenging and stressful. But with the right support, it can be rewarding and often satisfying.” Our family caregivers point to the value of peer support groups for people affected by dementia. Talking to people with similar experiences helped them to form stronger bonds of new friendships that will last even after losing your loved one. These friends stay with you lovingly and willingly forever.

*This trip was funded by Boots UK. 

Trent Dementia is an East Midlands based charity, hosted by the Institute of Mental Health. Email:This email address is being protected from spambots. You need JavaScript enabled to view it. or call 0115 74 84220. This service is free.

References

Alzheimer’s Research UK. (2015). Dementia in the family: The impact on carers. Cambridge, UK: Alzheimer’s Research UK. Retrieved from  https://www.alzheimersresearchuk.org/wp-content/uploads/2019/09/Dementia-in-the-Family-The-impact-on-carers1.pdf

Alzheimer Scotland. (2018, December 18). Friendship and dementia: Hints and tips on supporting friends with dementia. Retrieved from Friendship and dementia | Alzheimer Scotland (alzscot.org)

Dementia UK. (2018, September 21). The most common misconceptions about Alzheimer’s disease revealed. Retrieved from The most common misconceptions about Alzheimer’s disease revealed - Dementia UK

National Health Service. (2021, December 8). Looking after someone with dementia: dementia guide. Retrieved from Looking after someone with dementia - NHS (www.nhs.uk)