Interview with the daughter of a dementia sufferer

Interview with the daughter of a dementia sufferer

What did you know about dementia before the diagnosis?

I knew very little about dementia beforehand. It was only really that it happened to the elderly and its symptoms were confusion and forgetfulness. I had seen it portrayed. I didn’t know a great deal beforehand. Mainly that it was something that happened to the elderly and symptoms were confusion and forgetfulness. I had seen it portrayed on.  I had seen it on television as something that was laughed at.

How easy was it to get a diagnosis?

It was extremely difficult to get a diagnosis and distressing. . The family doctor was particularly reluctant to give us a diagnosis and it took many months and several visits and phone calls before a diagnosis. By this time it was obvious to ourselves what the problem was but felt we still needed support to find out what type and how to manage it.

What type of dementia did the sufferer have?

The type of dementia was vascular dementia and this was exacerbated by a series of mini-strokes, which made the condition worse each time.

Did you have any difficulties communicating with them?

As time went on it was difficult to communicate with the family member. Keeping calm and not getting angry helped but also being reassuring. Subjects became limited and difficult. As memory became impaired talking about the past helped. Conversations were patchy and infrequent. We were aware that not being recognised might happen but we were spared that.

What did you think of the level of support provided?

The level of support provided is extremely patchy and almost nonexistent. It also depends on what area of the country you live in and what resources and funding is available. When the family member moved from Merseyside to Yorkshire we had better supports and we were finally put in touch with the memory clinic. This gave us confirmation of a diagnosis. Also we got Social services involved who put a team of carers in to assess what support was needed. This lasted for three months and at this point a permanent team of carers was put in place. Finally we had help but this was still limited to short visits. It reached breaking point when we were paying for night time carers to attend the situation.

Was the sufferer offered any drugs to combat the syndrome? Did they help? We were not offered any drugs to help the situation because by the time we had our diagnosis we were too late for any medication to be helpful. It is really important that this process is speeded up however it doesn’t change the outcome but sufferers could have improved quality of life if it happens sooner.

How drastic was the decline of memory?

The drastic decline in memory was catastrophic. It started slowly and began as forgetfulness. Eventually the family member was unable to do anything for himself in terms of his own care and reluctantly we had to put him in a home. A few examples of memory decline were that he thought his parents were still alive and they had been dead for a number of years. Also the order of doing simple tasks was extremely confused.

Did you notice a change in personality?

There was a change in personality but in our situation these were mostly positive. He stopped worrying about things that had bothered him hugely before and let go of all that. He could get a bit angry but this was if he was in a stressful situation mainly hospitals. They proved to be the worst place for a dementia sufferer to be. They were very unhelpful and lacked understanding and compassion. Once in the brilliant care home we found the family member well looked after was happy and very contented.

Was it easy to get help with care? Was this to a satisfactory level?

Once we got in touch with social services, which is a minefield but it helped that my husband was a social worker. The carers that came in to the home were in the main very good at their jobs. They took time and had patience. But from time to time they didn’t turn up which was extremely stressful. Overall I was satisfied with the help in getting care but it could be improved and speeded up a bit. It helped knowing a bit about the system ourselves.

Did you make a lasting power of attorney? How easy was this?

We did make a lasting power of attorney and this was vital. However that is an extremely complicated process and very time consuming. It also took a long time to put in place and once in place it didn’t always help. But we certainly couldn’­t have looked after and protected the family members business affairs without it.

Reflection
The main thing I will take away from this interview is that there is a need for raising awareness, as the person I interviewed knew very little about dementia before having a family member live with it. This shows that even adults with elderly parents know little about it, not just young people know little about it. This was better for gaining an overall understanding of Dementia and how it effects people.