Finding a way: Making Dementia Friends while being a carer

My mother-in-law Connie, who I call Mum, is 83 and has mixed dementia – vascular dementia, Alzheimer’s disease and frontotemporal dementia. She was officially diagnosed early 2018, but had been living with the symptoms for several years prior. I have been caring for her since 2015.

I started off knowing very little of this condition and discovered that the people around me were not any wiser.

I was very lost until I discovered Alzheimer’s Society. Whether I need information, support, training or a place to vent, the Society is there for me.

I’m now a Dementia Friends Champion, an active member of the Islington Dementia Friendly Communities steering group and I volunteer in many other ways.

I want to help create a more supportive community for Mum and others living with dementia as well as their carers.

Change and responsibility

Prior to the pandemic, I would regularly take Mum out for cognitive stimulation, light exercise and social interaction. COVID-19 put a stop to this, which has not been of benefit to Mum. Her dementia has certainly progressed significantly, and she is physically more fragile.

Looking after Mum was even more challenging at first, when there were so many unknowns – having to think of ways to keep her stimulated at home, sourcing essential supplies and of course keeping her safe.

Thankfully, we have been able to participate in a number of virtual activities, which have been useful. Of course, these do not compare with the level of interaction and stimulation provided by an outing.

Our routine has settled down and things are now much better. However, supporting Mum also means being shielded with her, which has an impact on my physical, emotional and mental wellbeing. I miss being able to go out and get some respite, or to meet up with friends.

The responsibility of keeping the household safe and running smoothly is stressful, especially having to play different roles – the happy face for Mum and the concerned face for when she is not looking.

Change for others

I became a Dementia Friends Champion in October 2019. I was only able to arrange four in-person sessions, but since last May I have delivered about 40 online sessions and made nearly 400 Dementia Friends.

I have limited available time, especially while caring full time, but online sessions are easy to organise and allow me to reach a wider demographic.

I hope to help people who otherwise may be lost as I was, especially with the pandemic where family members may find themselves having to care for their loved ones with little or no physical outside assistance.