Dementia : Time to Act!!!

Every so often as a nurse, I am invited to events that genuinely, and unexpectedly move me. They make me happy, sad, and also, quite angry. Yesterday was one of those occasions.

Yesterday, I was asked to educate a group of people about the NHS 111 Service to a “Dementia Cafe” in Ealing. Presenting is something that I have no problem with, and so I went along. 

The Dementia Cafe is set up by the charity Dementia Concern, who organise an evening where people with dementia, as well as their carers and loved ones are invited to come together to talk, to share stories, and to have an evening out. For some, it is just simply an occasion to ‘get out of the house’. Me talking was just a tiny part in the middle of their evening whilst coffee, tea (and wine!) was being served.   

The evening was fantastic, they had a brilliant entertainer singing and getting everyone up dancing, and forgetting their troubles, and watching people come alive to music will live with me forever. That was the moving part. The anger hit me afterwards.

While going round and talking to people about their experiences, I spoke to a gentleman whose wife had advanced dementia, and he had difficulties with his eyesight. While speaking to him, he asked me if I could organise respite for him so he could have a break whilst ensuring that his wife could be looked after as well. Unfortunately, as much as I would like to, I can’t, so talked to him further about what was going on. 

His wife had been diagnosed with dementia 10 years previously, and had deteriorated to the point where she was no longer very communicative, and was in a wheelchair. He received carers 3 times a day for his wife, and also sometimes had a carer for him. With tears in his eyes, he spoke about how he used to have a carer around the clock so that she could be looked after, but could no longer afford this. The carers, provided by Social Services, would come in, but he said they would often come at the wrong time, and only stay for 5 minutes. Their last visit was at half 4 in the evening, and then he would be left to get his wife into bed in the evening. She would often be incontinent in the day, and because the carers wouldn’t come when needed, he was having to assist on his own. 

I asked him if he had spoken to Social Services about his concerns, and his need for more help, and he said that he had a social worker, but ‘she doesn’t care’. She doesn’t answer the phone, and doesn’t come back to them when asked. He also said that the Social Worker changes every 8 weeks, so they never get to know each other enough, before the next one comes along. 

These people are stuck in a cycle of bureaucracy and red tape. I appreciate that social workers are pushed beyond the limit at the moment, and these vulnerable people suffer. It is just not on.

Afterwards, while feeling a bit cross, I spoke to one of the volunteers. She goes and acts as an advocate to these people and their families. She said to me that the man’s story was not a new one. 

Previously, she had known a husband and wife, and the wife had advanced dementia. The rest of the family had moved away, leaving just the husband on his own looking after his wife. He had carers, but like my gentleman, had the responsibility of looking after his deteriorating, frail wife on his own. After repeatedly asking for help, and not getting any, the only way he saw a way out was to end his life. He was 83 years old. The wife is now in a nursing home.

What kind of society do we live in where this is the only way out for people? Where is the community anymore? Why are people losing their dignity, their own worth, and having to care for their loved ones without adequate support? The wedding vows state “in sickness and in health” - this should not be “without anyone else helping you”. People in their 80s built this country they endured some of the worst times in modern history. Is this the thanks that they get? It’s truly unacceptable, and we should not tolerate it. 

We need a revolution in this country. We need to bring back adequate support when people need help. We need a service and a system that is effective, and responsive to need, not for when it is suitable for Social Services. These people deserve the most support, not the least. We need change, so the most vulnerable people get the help they need, and they deserve. And this needs to change now. 

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