Long lonely days for many living with dementia


End loneliness-care industry newsAs we head into a new year and the celebrations are over, many people with dementia and their carers may face long, dark days ahead until they next spend time socialising or getting out of the house.

It’s a sad fact that as the condition progresses, many people with dementia may find it difficult to recognise faces of friends and family members, but will still hold an ‘emotional memory’ which means they continue to feel happy long after a visit or experience that they may have forgotten.

Spending time with loved ones is important because it can stimulate feelings of familiarity, happiness, comfort and security. Staying connected and taking part in activities helps a person with dementia feel less isolated.

Sara Firth, 50, lives in Yorkshire and has just given up work to become a full-time carer for her husband, David, 67.

Sara says her husband is at his best when he’s out and about. He’s less keen on visitors to the house, but loves being out in social situations like the pub etc. Sara says there’s a noticeable difference in him on days when he hasn’t been able to get out. They haven’t been directly affected by the flooding in Yorkshire but haven’t been able to get out so much because of the weather.

Signs of David’s condition manifested in small incidents, such as forgetting what he was going to order in a restaurant; forgetting words, or putting words in the wrong place e.g. call wallet his “sweets”; and inappropriate behaviour. Her husband was always a big fan of the Rolling Stones, but in December 2014 when Sara showed him a photo of the band, he was unable to recognise them.

Sara and her husband have been together for 35 years, during which time he had always kept his journal. In September 2014 Sara realised that he had suddenly stopped writing in it. He was diagnosed in June 2015 with Alzheimer’s. Since January, he has rapidly declined, getting mixed up with words, hallucinating; talking about his mum and dad who passed away a long time ago. He frequently gets family members mixed up with school friends and feels very connected with his much younger days.

Up until the middle of this month, Sara was working full time (2 x part-time jobs) and sharing caring among their large and supportive family (6 children).  Sara has now given up one of her part-time roles and will have to give the other up in a few months.

Sadly, Sara recently had a heart attack and so has been off work on extended sick leave. She has noticed that her husband is more stable when she is around and so she worries about going back to work.

One day per week he goes to a dementia day centre (NHS); this will go up to 2 days a week in due course. They run dementia-friendly activities – she is so relieved to have this help, as she has bipolar and it is hard to keep herself on an even keel.

She never knows if she is doing the right or wrong thing – e.g. should she correct him when he gets things wrong, tell him she’s not his mum she is his wife. She said that it is not “until you get formal diagnosis that you look back at behaviours and realise.”

“It can be very emotionally hard, ‘if only I had something all that time ago it might not have been as bad as it is now.’”

Sara finds it hard to know what the right choice to make is. She knows with some medication you can’t drink and her husband loves to go to the pub once a fortnight to see his friends – this is very important social event for him. She doesn’t want to take this away.

Dementia has a huge impact on people with the condition and their friends and family. It can strip you of your connection to the people you love. As the UK’s leading dementia support and research charity, Alzheimer’s Society provides information, advice and practical and emotional support. The charity runs nearly 3,000 local services including befriending services, dementia cafes, and dementia support workers. These services enable people affected by dementia to stay connected and feel part of their community. Visit alzheimers.org.uk/localinfo for more information.


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