Art therapy in dementia

Similar to music therapies, art therapy has proved to be an incredibly positive and useful task for many people suffering with dementia to take part in. Art therapy;

• can relieve anxiety
• can trigger memories
• is a way of someone expressing them self, especially if they cannot communicate verbally
• encourages social interaction
• stimulates the brain

Activities!

Finding an activity that someone with dementia can participate in, and enjoy, can be extremely challenging. In this post I will write about activities I have done with residents in the past, it is of course tricky to say things that will definitely work, as every person with dementia is unique.
As with every other aspect of caring for someone with dementia, it is key to know their background as much as possible when thinking of activities to do with them.
For some people games such as dominoes will work, some people will still be able to carry out activities they did before they had dementia, like gardening or baking.
For people with more severe dementia it can be tricky. An activity I did with my residents many times was something we called balloon therapy, it isn't as fancy as it sounds, basically just throwing/hitting/tapping/bopping a balloon between you. I don't know what it was about this but residents who weren't interested in many things would tap the balloon or hit the balloon back to me.
It is important to know the background of the person who has dementia, as many people will enjoy doing the things they used to, or things that are related to a job they may have had. I have cared for people who were painters and decorators or builders in the past and they enjoyed having paint brushes or cloths to mess with, they also enjoyed having sand paper and would sand down the edges of tables and chairs. Many women I cared for took real joy from tidying up as they had been mothers who stayed at home with their children.
We also had visits from people who provided animal therapy for our residents, we had a 'pat dog' who visits every other week, we also had owls, rabbits and guinea pigs come in, and many of the residents enjoyed this. For visually impaired residents there would be different furs or feathers to touch and feel, and we also had residents who had either been farmers or had pets who enjoyed this. Animals have proved to bring joy to people with all kinds of illnesses, mental and physical, these are some videos I think show how wonderful animal therapy can be.

Palliative care

Something that is very sad to think about is palliative care, or end of life care. There is wide research to show that hearing is the last sense to be lost when someone is dying. This is the reason calming music is often played in the rooms of people who are at the end of their life. Sitting at someone’s bed side as they pass away can be extremely difficult to do, some people find comfort in it, others people don’t.

I cared for a resident who had no family at all, and no friends because she had out lived them all. We had a very strong bond, maybe because she had nobody else in the world apart from her carers. She was extremely important to me. For the majority of the time that she was in my care she was fighting fit, as fighting fit as an elderly lady can be anyway. She overcame a broken hip and several chest infections. As time went on and her dementia progressed she became more aggressive towards her carers and on many occasions I was the only one who could successfully get her dressed or the only person she would speak to. We had a bond I’ve probably never experienced before with a resident and I think this was because she had no family, she was aware other residents had visitors and she did not. As I was a senior carer I often had extra paperwork to do and I would pop in on a day off for an hour or two to finish it. As my lady had told me it made her so sad to not have visitors, I thought I would visit her when I was there on my day off, and see how she reacted to me when I wasn’t in uniform. She recognised me instantly, but she obviously couldn’t quite place me and she decided I was her dear friend from school, she had all the other carers running round with trays of tea and biscuits for us, and she told me how desperately grateful she was to have had a visitor. From then on I went to see her every time I was there on a day off, and then when I was next in work in my uniform she’d tell me how her friend had visited her and how happy she was.

Although she was in the late stages of dementia she had a lot of awareness about certain things. She asked me numerous times to be with her when it was time for her to pass away, as she feared that she would be alone, and how could I say no? I made sure that I would be telephoned if I was off duty when the time came, I wasn’t doing it simply to fulfil her wishes, but because I wanted to have those last moments with her. The telephone call came and within half an hour I was at her bed side. I had seen people pass away before, but they had always had family members with them, it was strange in a way to be the only person with her and for a moment I wasn’t sure what to do. She had always told me she thought I should be a nurse and, to be honest, she was a huge part of my motivation when applying for university. So I sat down, held her hand and told her I’d found out a few days before that I’d been accepted onto a nursing course. Her eyes were closed, she was perfectly still, her breaths were irregular and shallow, but I know she could hear me. I thanked her for always telling me to follow my dream and promised I’d make her proud. About twenty minutes after I arrived she passed away. I am sure in my heart she waited for me to get there, as I’d promised her I would. I am also sure she could hear me and I hope my voice gave her comfort at the end of her life.

The power of music

From my experiences in working with people in the early and late stages of dementia, I feel the most powerful and successful way of communicating with them is by music. I have cared for residents with dementia who didn't speak, or spoke extremely rarely, but would sing if music was on. It is astonishing to see people who cannot put sentences together anymore, or make conversation anymore, start singing songs and knowing the words, but it happens.
These are two of my favourite videos that capture the affect music can have on people with dementia.

The home I worked in had regular visits from a singer who came with his banjo and guitar, his performances of songs from the 40s/50s/60s used to light up the faces of residents. We also had visits from choirs at Christmas time and residents would beam when they heard songs like away in a manger. I, and the other staff, ensured we sang and danced with residents every day, even if we were restricted by time, even two minutes of song could make a huge difference to a resident's mood. The most popular songs residents never failed to sing with us were it's a long way to Tipperary and all things bright and beautiful. The songs your loved one liked when they were a teenager, or in their twenties or thirties, are likely to have a more positive affect than songs they may have heard five or ten years before they were diagnosed with the disease.
One of the most heartbreaking things about having a loved one with dementia is the feeling they are slipping away from you, and that you are losing them. I believe strongly music can do things that normal conversation can not and that, even if it's just for two minutes, it can bring out a side of the patient that is often otherwise hidden by the disease.

Communicating with a dementia sufferer

This will be quite a lengthy post as there is so much to say about communicating with people who are suffering from dementia and it can be very tricky. What I will write about are the experiences I've had and things I've learnt over the last few years. 

It is so important to talk to people with dementia, whether you get a response or not. It can be very disheartening for a loved one to not answer when you speak to them, or to not look at you. As a family member or friend of a dementia sufferer we can often feel we are invisible to them, that they do not know us, or even see us. It's important to remember that we cannot know for sure what they listen to or understand, therefore we cannot know how much our words might mean to them. It's very possible that dementia sufferers will listen to you and understand what you’re saying but cannot effectively respond. It is often worth trying things such as looking at picture cards or old family photos with someone who doesn't speak much or at all, pointing at faces or words will help focus their attention. You can try showing someone a photo of them when they were in their twenties or thirties and saying ‘that was the year you met grandad’, you never know what memories something as simple as that could reignite.

Often people with dementia can look as if they know what they want to say but are struggling to find the right word, if this happens you can offer them a word and see if it’s what their looking for. This is easier if you know the person well and can hazard guesses at what they want to say. Dementia sufferers can become extremely distressed when they are trying to communicate but are struggling, it can often cause them to become angry or upset. If that situation arises offer them comfort, reassure them it's okay if they can't find the right word, assure them there's no rush for them to say what they want to say, you have plenty of time to talk to them. When having conversations with someone with dementia, especially someone in the late stages, it's often easiest to ask them questions that have a yes or no answer, this is usually easier for them to respond to.
There are many non-verbal ways to communicate that can be effective, it is important to have open body language, kind facial expressions and something as simple as touching their hand with yours can have a very positive impact. It is, however, important to say here that knowing the person you are communicating with is key, as touching someone who has dementia and presents with challenging or aggressive behaviour may not always have a positive reaction.

It is mainly the memories that were made in later life that are lost or impaired for dementia sufferers. Many of the people I have known with dementia have often thought they were a teenager again, they often spoke about going to school or asked where their parents were. Family members and other carers would ask me what the best way to handle this was and honestly I don't know if anyone has the answer. In my experience, working on a challenging behaviour unit, the residents I cared for would often become very distressed if you didn't answer them in a way that satisfied their question. For example, if a residents had asked me ‘is it time for me to go to school now?’ and I had replied ‘you don’t go to school anymore, you're 78 now’ this would have very often resulted in anger, no matter how kindly I had said it, because they would think I was lying to them, or they would become confused and upset. In my eyes it was my job to make the lives of my residents as comfortable and care free as possible, and avoid any upsets. So instead I would answer something along the lines of ‘it's Saturday today, no school until Monday!’ which usually received a more positive reaction.

The other thing I was asked numerous times was how to respond when a residents asks where their husband is, when he's actually passed away ten years ago. This is a little more tricky than diverting them from wanting to go to school and again I do not believe there is an exact right or wrong answer. Some people have said to me it is wrong to lie to a resident, if their husband is dead and they're asking where he is then they deserve to be told the truth, with this I have to disagree. In my eyes what the person suffering from dementia deserves is the least amount of pain, stress and anguish possible. Each person with dementia is different, some have a lot of awareness and if you knew them well enough to know how they'd react then you'd be a better judge than me. So I am not saying they should never be told their husband has died ten years previously, but, as I said, for me my job was to minimise my residents distress. It is a difficult question to answer, especially if it's asked to you twenty, thirty, forty times a day as it often can be! My answers usually consisted of something like ‘oh Bill has popped out for a loaf of bread and a pint of milk, he'll be back soon’, which didn't always satisfy the concerned wife, but very often did. In situations like that it’s then important to use some sort of diversion or distraction to take their mind off it and comfort them so their mind will hopefully move onto something else.
I think the most important thing for me to say is if your loved one has dementia, and maybe they've recently been diagnosed and you don't know quite what to say or how to talk to them, do not be scared that you will get it wrong, you won't. Just show them the love you always showed them. 

As always I do not claim what I write to be golden, I don't expect everyone to agree with it. I just hope someone finds some comfort or support in it. 

Sending my love and support,

Catharine.

Understanding dementia a little more

This post is just to explain different types of dementia a little more, I won't rant on about all the statistics on dementia because they can be found all over the internet but there is one statistic I think is important for people to know. It is estimated in the UK at the minute there are 850,000 people living with dementia, and it is expected to rise to over one million by 2025. This staggering number is the reason more awareness is needed. 

There are various types of dementia, some well known and some not so well known, I won't go into great depth because, like statistics, you can easily find definitions of the types of dementia. 

Alzheimer's disease

Alzheimer's is the most common type of dementia, with around two thirds of dementia sufferers having it. In a brain that is affected by Alzheimer's nerve cells die, due to abnormal protein production, and collapse in on themselves and certain parts of the brain, especially the temporal lobe where memory is stored, start to shrink as a result. This shrinkage can be seen on brain scans. 

Vascular dementia

Vascular dementia occurs when the blood supply to the brain is not as good as it should be, or if it has been interrupted. Vascular dementia can often come from a stroke or a series of small strokes known as transient ischemic attacks. Strokes and TIAs are caused by restricted blood flow or blood clots, thrombosis being one of the most common causes of strokes. Together Alzheimer's disease and Vascular dementia cause about 90% of all cases of dementia.

Lewy bodies dementia

Lewy bodies accounts for about 1 out of 20 cases of dementia. Early on people with Lewy bodies dementia often have symptoms of Parkinson's disease. People with Lewy bodies dementia may suffer hallucinations, are often prone to falls and can be very restless, especially at night time. This is not to say all sufferers of Lewy bodies will experience hallucinations, and it's not to say sufferers of other types of dementia won't.

Frontotemporal dementia

Frontotemporal dementia attributes to around 1 in 50 cases of dementia. It is thought that it is more common in younger people, often people in their 50s and can be difficult to diagnose as dementia is rarely suspected in people that young. Some frontotemporal dementia is genetically inherited and it is not known what causes the non-genetically inherited cases. 

Parkinson's disease dementia
It is estimated that eventually one in four people with Parkinson's will get Parkinson's dementia. It is similar to Lewy bodies dementia but usually comes many years after the person develops Parkinson's.

Huntington's disease 
Huntington's disease is a progressive disease that affects a persons movement and damages certain brain cells. It is thought that for many people the disease eventually declines into dementia.

Creutzfeldt-Jakob disease
Creutzfeldt-Jakob disease is a rare disease that causes progressive brain damage, it is thought to affect 50 people each year in the UK. In the same way as Huntington's, it is thought this very often ends in the person having dementia.

HIV-related dementia
It is estimated about 10% of people with AIDS will eventually develop dementia, usually late in the illness.

Progressive supranuclear palsy
Progressive supranuclear palsy is a disease where the nerves that control balance and movement are damaged. A person may also present with personality changes and it is thought this disease often declines into dementia. 

This is a list of reading I would suggest to anyone who is interested in understanding types of dementia a little further;

• 'Understand Alzheimer's disease and other dementias' by Dr Nori Graham and Dr James Warner.
• 'Alzheimer's and other dementias: answers at your fingertips' by Harry Cayton, Dr Nori Graham and Dr James Warner.
• 'Dementia: compact care' publication by the Royal College of Nursing, 2015.
• 'Between remembering and forgetting; the spiritual dimensions of dementia' by James Woodwar.
• 'How many camels are there in Holland? Dementia, Ma and me' by Phyllida Law.

A proper introduction

Hello!

I thought I would write a more in depth introduction to myself and this blog for you to understand my reasoning for making this.

As I already said, I am currently studying to be a mental health nurse and my path to making the decision to study nursing most definitely started at my first experience of dementia.

My first experience of the disease was in 2012 when my grandmother was diagnosed with the early stages of vascular dementia. At this point I was studying for my first degree (which was nothing healthcare related), it happened to be summer so I had a lot of time off university, so I went to help my grandmother around the house, doing small jobs for her and making meals etc. For me, this was a bizarre experience, to see my grandmother change so drastically. It was extremely sad, as I'm sure you know, or can imagine, but it also fascinated me hugely. After a short while my grandmother moved into a nursing home and I returned to university. It was then I decided to get a job in a nursing home myself as I had found I had such an interest in that type of work.

The nursing home I worked in was not what I expected it to be at all. I was, I'll admit, fairly naive and thought carers in nursing homes often sat quietly doing crosswords with residents, and although this does happen, the home I worked in was often extremely different. I worked in a home that had both a general nursing unit, and a challenging behaviour unit. I worked on both but primarily on the challenging behaviour unit. Every resident in the unit had a type of dementia, some also suffered from depression, schizophrenia or cancer. To say this work was rewarding doesn't do justice to it, I discovered a passion I never knew I had. I worked on this unit for almost 3 years, near the beginning I was given physical intervention and restraint training, and I went on to often witness behaviour from residents a lot of people would never believe elderly men and women were capable of. After 2 years I was made senior carer of the unit, which is something I am very proud of. There were good and bad days of course, like with any job, but I loved working there and it was then I decided to become a mental health nurse.

Something that helped hugely in my decision to become a nurse was the support of the residents family members. As I was senior carer and worked there for quite a while I built extremely strong bonds with the families of the people I cared for. I was often the person they turned to for advice or support, I comforted them through the illnesses and deaths of their loved ones and in return they gave me the confidence and self belief to apply for nursing, through their words of gratitude, encouragement and love. As you can imagine, in a job like that, you build near enough unbreakable bonds with residents and their families, and there are many residents who have now passed on who I still hold dearly close to my heart and will never forget.

My main reasoning for making this blog is to raise awareness about dementia. I feel I have experienced things that can help other people who are struggling to cope with a loved one suffering from such a horrible disease. I will post on here the things I have learnt about dementia, things I know about communication with dementia sufferers, things I have taught my family to help them deal with my grandmother's illness, activities I have done with dementia sufferers that have been positive and basically anything I feel may help someone.

It is heartbreaking to see someone with dementia, I do not believe there will ever be enough awareness raised about this disease so if this blog can help even one or two people in any way then I will be very happy.

Sending my love and support,

Catharine.