“There’s a science to fear
It plagues my mind
And it keeps us right here
And the less we know
The more we sit still”
For those of you who (like me) missed This Morning on ITV on Friday 13th December it can be found here https://www.itv.com/itvplayer/this-morning at about 45 minutes in. Arlene Phillips and Fiona Phillips, who have both experienced dementia within their families took some time to chat about the G8 dementia summit and their hopes for the future of dementia. Here is a quick rundown of the interview and my thoughts included.
I agree with Fiona, the G8 dementia summit sounded, and was impressive. But so much was omitted, or not talked about enough that it was a little disappointing. Getting people talking is amazing, but again, the money just being thrown at it is not enough. People are currently being told to get home and get on with it, and have to rely on social services, which are completely drained. My experience with social services has been fantastic, but I have heard far too many stories of Social Services not getting involved until frankly it is too late, not understanding the illness and the impact it has on families, or acting in a beneficial way to all. There is no national blue print and it is such a post code lottery on what kind of service you get but, also depends on how much you or loved ones fight for you. For those without a voice, I can imagine so many suffering in silence.
As Arlene said, in hospitals, individuals with dementia often are put on a main ward, which can be distressing for them, and for other patients who may not understand. Patients who have dementia need special and extra attention to keep them feeling safe and reassured, to prevent any negative behaviours.
My previous posts on the G8 may have seemed a little angry, sad or let down. And yes, I guess I won’t be happy with any result, it could always be better. But I agree with Arlene saying that at least the doors are now open, and as one of my twitter friends said, it is now down to us to keep the snowballing going. I am glad it has moved so quickly (in relative terms, the development of awareness and the summit etc has moved much quicker than those of cancer/aids) and only hope we can keep things going to a positive result.
The story of Arlene’s father is probably a common one (more common than it should be – where the family has been told that the care home does not cater for those with dementia or Alzheimer’s, and so the father had to move care homes, after he had already been settled in – I think this is disgusting, a home should be able to cater to all needs and is something we should be looking to resolve ASAP!)
More focus needed to be put on the support needed by carers, and the work carers do, especially the unpaid carers, who take it upon themselves to give up work/lives/ etc and undertake a job that takes up 24/h a day 7 days a week. For nothing.
I don’t think you would know if dementia was striking you, even if you had cared for or witnessed a loved one with it. And there was a disagreement about whether we would want to know or not. I don’t want people to be frightened to find out they have dementia. That’s half the issue at the moment, I want people to know about the support available and that we can assist them to live as much of a normal life as possible.
The fear is one of the greatest reasons people refuse to get diagnosed or even talk about dementia. Fear of what may happen to them once outsiders discover they are mentally ill – only within the last 100 years have we stopped taking away people’s rights and locking them away because they may or may not have had a mental illness. Fear of what will happen to their family as they may no longer be able to provide for them, or knowing they may well forget who their family are and worrying about the distress this would cause. Fear of what will happen to them internally – will they forget how to do things, will they need help washing and dressing, or even *shock horror* toileting. The fear of losing their identity, independence and the fear of demeaning themselves all contribute to an individual remaining silent about the struggles they may be facing. And all this is down to the way we have portrayed dementia and other mental illnesses in the media, and it is down to us not making enough of a fight for proper love and care for those who need us to support them in an independent life. If we educate ourselves and others we learn that with small alterations life can still be lived.
A diagnosis of dementia never has to mean everything you know and love is over.