Dementia – part 2
So what is it like to have dementia? I’m going to start this off by saying what I did in my last blog, I don’t know, as I don’t have dementia. I’d also like to add that I don’t care for a relative with dementia, although I have a lot of clients who do have dementia and I’ve worked with a lot of families.
I’ll start this series by talking about how families cope. There are usually two basic responses and both are understandable. The first response is that the person with dementia needs help and support and they are willing to provide whatever support they can that that person needs. The second response is a bereaved response, in that they realise that the person they knew has gone, even though they have not passed away. This usually happens, if it is going to, when dementia has progressed and they end up having little to do with their relative in a hands on way, as they just struggle too much to cope with being around the person with dementia, so they stop visiting.
So families end up having to assist and support in first instance, without disempowering, which is a very hard balance to work out. Sometimes the person with dementia wants to be looked after and their way of coping is to abdicate as much responsibility as possible. It is however usually helpful for the person with dementia to remain as involved in their own life as they can possibly manage. If they take a while to work out something, it is easy for the relative to just jump in and take over and although easier in the instance, it may contribute to the progression of the dementia, as if they are not “using it, they’re losing it”!
I’ve heard the expression that the individual “has” dementia, but the family “suffers” from dementia. It affects a whole family, not just the individual, as everyone has to adapt and change to the changing condition. I’ve often described it as a process of crisis management for families. I advise families that if they resolve one issue, such as getting LPAs in place (as long as that is still possible), that something else will go wrong, such as their loved one having a fall. What they need to understand is that there is another problem coming and to never have the mindset that “if they just sort this out, that everything will be fine”. It will be fine for a while and then something else will go wrong and knowing that something else is coming makes it easier to cope with when it does come.
Following the recent awards ceremony in Plymouth, when Plymouth became the first city in the UK designated as dementia friendly, I’ve volunteered to become a Dementia Champion, as my part to the hard work and huge efforts undertaken by many people across many organisations to make this happen for Plymouth as a city.