Sunday, 21 September 2014

Dementia and Depression

I have heard it is said, that the numbers of people going to the Samaritans these days with dementia related illnesses is on the rise. I was in one way surprised by this, until I looked at the  possible reasons

Diagnosis of dementia is not something that anyone wants, because its like being diagnosed with inoperable cancer, its an illness with no known cure.

When you are given this diagnosis you may well find that you are not given any support or help, and therefore you may well become desperate. Many have said that the diagnosis of dementia is like a death knell, and many carers etc, start grieving from then onwards.

This may also be the case for anyone who does not have family support, or indeed good friends around them.

But hidden inside this illness is depression, something that many consultants do not mention, or if they do they imply, that you are simply depressed and do not have dementia.

When I was diagnosed I was told I was simply stressed, then after 10 weeks that changed to depression, something my wife and I knew was wrong, so my wife demanded a second opinion from a consultant and the rest is history
I was enjoying my job, I just kept forgetting to do things and forgot peoples names which was upsetting

I got a lot of support from my consultant and was then told to go to our local Alzheimer's Society branch office were we would get more support and help to see us through.

This is something we never hear about these days, because many of these local offices and support services have been closed down, so in many cases people are left to find their own support.

There are also those who perhaps do not accept that they have the illness in the first place, and this is hard to understand, because if you cannot accept the diagnosis you will never be able to move on and get on with life. Sometimes its the family's who refuse to accept the diagnosis and that puts extra pressure on those who have the illness, or there are family rows about how to deal with the person and in many cases the person with the illness starts to feel worthless and useless

There are many who lose control of their lives and feel useless or worthless, because like me they may well have lost their jobs through the illness. I can understand people feeling like this because you cannot get to grips with losing your role in life. 

However the depression in dementia, it seems is caused because we are losing control over our lives, and rather than trying to move away from the things which are difficult we may keep fighting.

My consultant told me at the start, that things would become difficult, and some of the things I have done for years may well become impossible to do, simply because the brain has forgotten how to do these jobs.

This  consultant said, if you cannot do something one day, then leave and try on another day.

If it fails again on the second go, leave it until another day

If it fails on the third attempt, leave well alone and try to move on, because by trying to do the impossible, you will only get very stressed and upset and make yourself worse.

This advice always stayed with me, and although I still get upset when things go wrong, I know that I have to move on.

So where do we go from here. I do feel that as I said before, we need more dementia groups in every locality, where people can go for advice and support, we cannot rely on the internet, even if you can use a computer in the first place. Face to face advice and support is always the best.

 If you have local groups, you become friendly with people and discuss your problems, with others, even though your problems may be different to someone else,  simply because there are so many variations of dementia, and no two people have the same symptoms and problems

If you get into a period when you feel depressed try to speak to someone, get it off your chest, do not sit and stew on it because that will only make it worse

 But I guess after all of this it comes down to getting a formal diagnosis in the first place, followed by good support from the Consultant, followed by support from family and friends to help us steer clear of depression if possible.

I do feel that consultants and doctors should be more aware of depression in dementia and should explain it to patients after or during the diagnosis   

However never forget that there are people out there who you can speak to for support, people like the Samaritans, all volunteers, and they will try to support you through the rough times.

Becoming more involved after the diagnosis of dementia

Many people feel very flat once they have been given the diagnosis of dementia, and cannot think of any way forward. This is because you cannot think of any questions at the diagnosis, and they only come to you when your back home, trying to work it all out in your mind.

This is when many people come off the rails so to speak, because they become desperate and depressed, and without support you feel as if your world is coming to an end.

 I was extremely lucky to have a wife and daughter who were very supportive and did not allow me to dwell on what may happen.

My daughter who is a biologist explained quite a lot at the time, and she still helps me understand things these days

But for others things may be different, depending on whether you have support at home, or friends near by who can support you

There are many online chat rooms where you can get help, many of which operate 24 hours a day, but that depends on one fact, you need  a computer, and like it or not many people do not have them these days.

Yet there are opportunities out there if you get the support and know where to look

There are many charities dealing with dementia who give some support, but getting good local support these days is very hit and miss

There are also many new independent dementia groups being set up around the UK and they are filling in many of the gaps left by the closure of Alzheimer's Disease Offices and support groups.

Many of these places have support staff who can come out to see you and give you the advise you may well need.

Many people say that they would rather have a face to face chat with someone than discussing problems on the computer, and in many cases I would agree.

If you are lucky enough to get support and get involved with a good charity, you may well be invited to be a spokesman in the media, or you may be invited to be a speaker at events.  If its what you would like to do., there are always opportunities.

Speaking about your problems, not only allows others to understand what you are going through, but it also helps you to understand the illness yourself and come to terms with it

 I confess that the thought of doing this before the illness, was something I would never even consider, yet I took to it after a while and never looked back.

Other people take this a step further by working with Alzheimer's Disease International, or in Europe where they have committees working on dementia projects.

Because I dropped out of the charity work for a while I was never invited to join these groups, because you need to be sponsored by the charity.

But the world is your oyster after the diagnosis, and you should never sit back and think its the end.

Very Inspiring Blog Nomination

Very Inspiring Blog Nomination

I’ve been nominated for the Very Inspiring Blogger Award. Thank you to fellow blogger,
 Helen Whitworth of the Lewy Body Rollercoaster blog,
for this exciting and totally unexpected honor. Be sure to check out her equally inspiring blog,
Lewy Body Rollercoaster

Here are the rules:

1. Thank and link the amazing person who nominated you.
2. List the rules and display the award.
3. Share seven facts about yourself.
4. Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
5. Optional: Proudly display the award logo on your blog and follow the blogger who nominated you.

Here are seven facts about me:

1. I  was born and live in County Durham in England, not far from the famous Durham Cathedral.
2. I am married and have two wonderful Children along with four lovely Grandchildren.
3. I’m a retired University College Engineer where I ran all of the services and kept things going 24 hours a day
4. Since retiring, I have spent my time trying to help others with dementia and I am proud to be a Lewy Body Society Ambassador, and a Dignity Champion.
5.I spend a lot of time on my good days speaking to people about the illness, and also speak to Graduate Nurses at University.
6.  I spend some of my time trying to write my blog about my illness and its problems. This was started by accident, but I have been humbled by the warm comments and thanks I have received, from other people who have this illness around the world.
7 I also find that reading other blogs about dementia to be very helpful and at times comforting, as I get to know people and feel part of their lives
8 I am proud to say that since starting this blog just under two years ago it has had 71-00 page views in 106 countries, something that I feel is an honour

Please follow the other blogs on the side of my blog, as they cover many interesting subjects.

Saturday, 20 September 2014

Remembering the past can improve the present for people with dementia

From todays Guardian newspaper 

Malcolm Jones works as a reminiscence arts practitioner, using creative tools to help older people communicate

The smell of an old brand of soap, photograph or war object can help trigger a memory. Photograph: Colin Underhill/Alamy
I get up around 6:30, check emails and attempt to raise my 10-year-old daughter in time for school while grabbing something vaguely healthy for breakfast. Then I head to whichever care home I’m working in that day.

I work with the charity Age Exchange as a reminiscence arts practitioner – running projects with both active and frail older people in care settings. Reminiscence arts is a unique way for artists, therapists and practitioners to work with older people, particularly those with dementia, to evoke and inspire their memories and imaginations. We use techniques derived from dance, visual arts, drama, literature and music to learn about people, help them communicate and build new relationships, despite the challenges dementia can pose.

Practitioners come from many walks of life: visual artists, musicians, actors, occupational therapists, arts therapists and social workers. I’ve worked in theatre, education, community arts and inter-generational projects. I’m currently focusing on a research project for Age Exchange, exploring how reminiscence arts improve the wellbeing of people with dementia.

When I arrive at the care home I go to the person’s room for a one-to-one session. They can be very frail and have difficulty communicating. I try to connect with them by introducing myself, smiling and perhaps holding their hand. I’ll play music or bring something from our memory boxes. The smell of an old brand of soap, photograph or war object can help trigger a memory that the person might be able to tell me about, or articulate using their body language.

In the afternoon I’ll often run a group session with my fellow practitioner, Susan. These involve six to eight people chosen by the care home, and two care staff to provide support. Susan and I prepare the session together, either basing it on what people have enjoyed previously, or using a set theme, such as holidays, a local landmark or an anniversary. We’ll use sensory objects – even a colourful silk scarf may evoke a memory when gently skimmed over peoples’ hands. I’ve had some funny moments using costumes and hats in the past – giving a cap to one man immediately triggered his Norman Wisdom impression!
Malcolm Jones
Malcolm Jones: ‘Our work at Age Exchange is based on compassion and a real desire to learn about people.’ Photograph: PR
We find ways to encourage interaction within the group, such as throwing and bouncing balls of different sizes and textures. People make eye contact with the person they are about to throw the ball to, which helps them relax and begin to recognise each other. Susan is a visual artist, so sessions often include handicrafts, art or storytelling.

Our group is currently working on a play about childhood and growing up, using rhymes and street games with lots of rhythm and familiar words. We’re going to add stories about being naughty and happy, and about evocative tastes and smells. As people forget lines and words, plays like this have to be improvised each week. We have 15 sessions left in this project, so with prompts and music we’ll be able to create something special to perform at the end.
We finish with tea, biscuits and music. We’ll chat or play instruments, clapping and moving to a lively song, before a 10-minute debrief with staff and each other.

Our work at Age Exchange is based on compassion and a real desire to learn about people. We help them understand who they were and who they are, in whatever way possible. It’s incredibly rewarding for everyone, including us practitioners. Care staff learn a lot by participating alongside residents, and we provide training on how to use reminiscence arts to build relationships with older people and find out about their life histories.

On the drive home I often have to detach myself from the sadness I see during my work and focus on the fun and creativity instead. Dinner, a glass of wine with my partner and a bedtime story with my daughter bring the day to an end. She tells me about school and I think of some of the memories that were shared during my sessions. I’m often left thinking about how closely all our lives are woven together.