Tag Archives: caring

Caring for someone with a dementia

3 Aug

 

Caring for someone with a dementia

 

There are lots of different kinds of dementia and they have slightly different presentations, but the key points about all dementias is that they are changes to the brain, that affect memory and brain function, that is deteriorating.  There can be changes in personality and the deterioration might not seem to make sense, as someone can still retain one key skill long after they have lost other key skills, it doesn’t always work that the person with dementia loses everything at a nice even pace!  And importantly, eventually it will be terminal.

 

It is useful to get a diagnosis of the kind of dementia that the person has, as it will help the carer to understand some of the changes that will happen.  Diagnosis is also a gateway to access some services, that will support both the person with dementia and/or their carer.  And making sure that the carer is supported is really important, as without the carer their life would be much more impaired and disempowered.  The carer will facilitate the best outcome that can be achieved.  In the UK dementia costs £26bn a year, the biggest part of that figure is made up of the work of unpaid carers, £11bn, and the NHS and social services make use of that unpaid care, which means supporting the carer to ensure that carers can keep going.

 

There is no cure for dementia, there is a lot of worldwide work being done currently looking at different cures, creating new drugs and repurposing existing ones and although there have been some promising initial results, I have been told that a cure is a least 10 years away, if not more.

 

Because there is no cure, the only therapies are those that keep the person in the state that they are in, but do not roll back the clock on the progression of the illness.  These drugs only work for a certain period of time, as they will not stop the underlying progression of the illness, but will maximise the cognitive abilities that they have.

 

The other therapies that are useful are the social interactions, as long as they are meaningful and there is a lot of work being done on these.  Music seems to be quite powerful to many people.  Football dementia cafés are great for football fans and here in Plymouth we are lucky enough to have a dementia café for veterans.  Elsewhere there are dementia farms, which for former farm workers is incredibly powerful that they are once again able to participate in the workings of a real farm.  When the idea was first mentioned there was concern about the risk, but the risk is managed and the participants get a lot of value from it.

 

Carers need support and respite, they need to be able to have a life of some kind away from their caring role, for an hour, a day or a week. Family carers do an amazing job to care for people with dementia and yet they are working alongside a progressing condition that is slowly taking their loved one away.  85% of carers are clinically depressed within a year of diagnosis, it is hard dealing with the condition and its progression.

 

A person with dementia can live a fulfilling life, they can be empowered to do the things that they want to for as long as they are able to.  It takes the carer and the understanding of a whole community to do it well.

 

If you need help caring for a loved one with dementia, let me know, I understand what it is like.

Carers feel alone

15 Sep

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Carers feel alone & bullied

 

In recent weeks, I’ve attended a couple of assessment meetings to advocate on behalf of a client, one of which was a PIP assessment and at the end the client is so happy that they want to hug me, not shake my hand!  I’ve always attended NHS Continuing Care assessments and Social Services assessments and always with good results.

 

With 2 clients expressly saying to me that shaking my hand is not enough, it struck me that there must be so many people out there feeling alone and out of their depth.

 

Sometimes when I’ve turned up at meetings, I can be greeted with something along the lines of “you don’t need a solicitor” or “the meeting will have the same outcome either way, this wasn’t necessary”, but the reality is that it is necessary and the outcome is not the same.  For starters, the person that I am advocating for doesn’t feel alone and nervous, they are more relaxed, as they have someone there on their side!

 

These meetings can discuss very personal issues, things that they don’t like to talk about with friends and family.  They don’t want to burden them with their issues or the keeping of their privacy, but they still want someone compassionate and understanding, who is not going to judge them.

 

Carers are amazing, they do a brilliant job of looking after people and if they all stopped, it would cost the UK billions (£11b for dementia alone in the UK).  They are often stressed because they are caring for a loved one, doing that is enough of a burden, they don’t need to feel isolated as well.

 

So if you are attending a meeting or know someone who is and want someone there on your side, give me a ring.  Love to help.