Looking after a relative with dementia is very challenging! A study by the Alzheimer’s Society highlights Gordon, a 76 year old, man with prostate cancer caring for his wife Sue with dementia. During lockdown Gordon lost the paid carer who visited an hour a day, and Sue no longer can attend day care four days a week. Gordon says, 'The carers used to really help with my stress, giving me some time off to look after my own health. But when lockdown hit, I stopped getting that care and the day centre closed. It was all on me, and I didn’t want Sue sitting in bed all day. 'So, I took it all on - the morning getting up, cooking all the meals, all the washing, the housework. 'Sue’s not able to do anything for herself now, so it was exhausting and I began to feel very depressed. Gordon's situation isn’t unusual. The study found during lockdown family carers had to provide considerably extra support. 95% said extra caring hours negatively impacted their physical or mental health, 69% feeling constantly exhausted, 64% feeling anxious, 49% feeling depressed, and 50% developing problems sleeping. 14% had no time to see a GP about a health problem, more than 10% said they had an injury from caring.
Dementia Friendly Pentlands (DFP) is a voluntary organisation covering Juniper Green, Currie and Balerno supporting families living with dementia. Kay Latimer and the Team found many families are at their wits end looking after relatives with dementia.
Before lockdown we supported Drop-in Centres and Memory Cafés, learning a lot about the challenges families experience. Lockdown severely limited opportunities for DFP to support family carers. Drop-in Centres and Memory Cafés can no longer run and many carers are understandably cautious about leaving their house. Those shielding know this isolation can be challenging, but for people supporting a relative living with dementia, it is even more critical. Families separated by distance also worry their relative may come to some harm.
Families developing dementia symptoms since lockdown face particularly difficult questions like, ‘Why is my relative getting confused?’, ‘Is it an illness, or just old age?’, ‘Where can I get help? DFP can help with information about dementia, how it will affect their lives, and how they will get help.
DFP are running a project led by Trevor Adams, Trustee. The project asks families to share their experience of supporting relatives with dementia and what sort of help they need. This information will help DFP redesign and redevelop our services to fit with Covid restrictions.