Dementia and treating us with dignity

I got involved as a Dignity Champion a few years ago, after listening to people discussing the problems associated with dementia. However at an event and was so annoyed by the lack of dignity and care that I decided to do more, and help out where I could.

During this time I have spent time trying to raise awareness about the lack of Dignity and Respect, when treating people who have this illness in care homes and General Practise.

Over the last two or three years, I have spoken at events in North East of England Universities, where people are trained to do Nursing and social work, as I feel that it is very important to get in at an early stage and tell people how they should be treating people with dementia.

 

I also feel that by spelling out guidelines of how we would like to be treated, we are starting to have an effect, as most people “realise” that we are not asking for the world, but simply for things that most people take as normal.

 

I think that many people shudder, when we tell them how we want to be treated, as they then realise, that there is something fundamentally wrong with the training that many receive these days.

A few years ago, I spoke at the Launch of the Living Well with Dementia project, which was held at Middlesbrough, and after talking about Dignity and Respect, a few people came up and asked if they could use my script in their training at hospitals. 

 This was something that I had not expected, but I did not have to think twice about it, as I felt that it was very important, to get in at an early stage.

It also proved that these professionals were admitting that they did not know it all, and were openly  asking for my help as a person with dementia

Training people to understand the needs of those with this illness is not as easy as it looks, as there so many variations of dementia and we are all individuals, so I offered to go to speak to anyone who is training students etc, so that they will get a better understanding of what is needed, and how to treat people with dementia with the dignity and respect and care, THE SAME RESPECT THAT THEY WOULD EXPECT FROM OTHER PEOPLE .

It was pointed out at one event, those with the illness are in a better position than GPs or consultants, to tell others how we should be treated, because we are going through it on a daily basis.

There are many roles that a person with Dementia can do if given the support and help, and being a Dignity Champion is one of those, and I do feel that I am helping many people to understand the needs of those with this illness. There are many more people out there like me, so why not allow us to help you, and also help ourselves.

One of the main problems we hear about these days comes from the fact that many people think that because they know or have looked someone with dementia, that they understand everything thing about it and know all about its problems.

But this is far from the truth and there are well over 120 variations of this illness, and in each case, the people with the illness have different symptoms and struggle in different ways to others.

Even two people with the same form of dementia, can have vastly different symptoms and problems. This causes confusion to many people, but as we now know there is nothing straight forward about this illness.

Treat us with the dignity and respect that you would expect from others

By educating and training people to understand the problems people with dementia struggle with on a daily basis, we will then start to see people with dementia being treated with the care and dignity, that you would want from others.

Please don’t patronize us by asking a question and then trying to answer it. Give us the chance to think of the answer, as in many cases we need time to process the information before giving you the answer. That answer is better coming from us.

Look us in the eyes when asking these questions as we are human beings like you, apart from the problem with our brain.

I hate it when someone asks my wife how I am, when I am stood next to her, just how rude can you get. I am not a ghost or invisible, I am here and right in front of you.

Look at the person and not the dementia.

Remember that many get flustered because unlike you, they simply cannot come straight out with the answer, and if things go wrong we sometimes come out with the wrong words, and that leads to accusations of aggressive behaviour and being rude.

I have heard this on many occasions, which makes me think that the accusers really do not have a clue about the basics of this illness.

Treat the person as you would have done before the dementia, we may have an illness, but in many ways we are the same as you, we are all human.

Try to speak clearly, carefully, slowly, and where possible face to face, so that we stand a chance of understanding what you are trying to say.

Please don’t assume that you know all the answers about dementia and what it is like to live with it, but ask us, the people living with Dementia, and we will tell you what our problems are, or at least try to explain them to you.

Remember that people with strong accents, asking questions can be difficult to understand when you have this illness. As someone who grew up in the North East I now struggle with the accent these days, so if it is difficult for me, think what it is like for others.

Try to speak in a calm voice and not get agitated otherwise it makes those with the illness react in the same way.

 Do not discuss our problems with anyone else while we are there, as that is hurtful and disrespectful, we have ears and a tongue, and so we can answer back ourselves.

 We all develop routines that help us to get through each day, so please don't stop us doing this.

Some of us struggle with horrendous and quite vivid nightmares and dreams, leaving us very tired and perhaps agitated the next day. When this happens, we sometimes need a short nap during the day to catch up.

So please don’t tell us that we should not try to sleep during the day, when we could not sleep at night because of these nightmares.

People who say that we should not sleep during the day simply do not understand our problems.