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DEMENTIA AWARENESS WEEK (19-25th May)h

31 May

This was largely organised by The Alzheimer Society to help make people aware of this condition which affects at least 750,000 and many people remain undiagnosed and the incidence is predicted to rise to 1 million by. 2021.

What is dementia?

Dementia

The term ‘dementia’ is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. Symptoms of dementia include loss of memory, confusion and problems with speech and understanding.
There are some very good videos directed from their website to you tube that explain this condition
http://www.alzheimers.org.uk/talkdementia

Also, for further information
http://www.patient.co.uk

http://www.nhs.uk
http//www.dementiaweb.org.uk/news/
24hr helpline. 0845 1204048.

Patients with Dementia could benefit from new GP contracts
This practise has signed up for both doctors to carry out :-
A proactive approach to the timely assessment of patients who may be at risk of dementia.
We will screen for Dementia in a sensitive manner as part of an elderly / medical check or on specific request and carry out regular medical checks.

What do you look out for?

If you’re becoming increasingly forgetful, particularly if you’re over the age of 65, it may be a good idea to talk to your GP about the early signs of dementia.

As you get older, you may find that memory loss becomes a problem.
It’s normal for your memory to be affected by age, stress, tiredness, or certain illnesses and medications.

This can be annoying if it happens occasionally, but if it’s affecting your daily life or is worrying you or someone this may need further assessment .

Please don’t hesitate to see one of us in surgery so that we can assess you and get the right help in place as soon as possible or if you are worried about a relative bring them to see us.
Sometimes it is simply a wake up call to get your affairs in order and fulfill your ambitions and even if a diagnosis is not made doing this a positive move to face the rest your life.

Ealing has a particularly active branch of Alzheimer’s concern. They are very supportive to carers and their magazine is always available at the surgery.

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http//www.dementiaconcern.co.uk/Ealing

We are proposing having a talk at the surgery from a Dementia Keyworker
LOOK OUT for this on the web page.

My experience of my mother’s  suffering with dementia, which in the early days she told me on many occasions that I should share the experience to help others coming after her.

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Many of us will know someone or have a close relative with Dementia and know the heartache that it brings.
You cannot take the person out of the disease. “.

This means that as confused as a person may seem those who know this person will still recognise the person underneath and feel a connection.
My mother recently died at the age of 94yrs with Lewy Body Dementia following a slow decline over 6years. My sister & I found that talking to her as our mother telling her what was going on kept her as part of the family to the end and even if there was no recognition there was some connection. She still worried about us – were we working too hard, how were we getting home etc. she still had the same food preferences and insisted on drinking her tea out of a bone china cup and saucer.

She must have been aware she was deteriorating as she had been proactive in getting her affairs in order and had even been looking at sheltered accommodation. The diagnosis at that time was slow and confused and often doctors and nurses thought she was being lazy or difficult. She had frequent falls and several admissions and when given certain medication especially codeine type painkillers or if she had an infection she became more confused and had visual  hallucinations. On one occasion I visited her and she thought the place was flooded and she was stranded on her bed unable to even get to the toilet and pleased to see me to come to the rescue. I understood that this was not my mother and I had to explain to medical staff who assumed that was her character and thought she had a mental illness. It was very frustrating as the proper diagnosis evolved very slowly . I was later to find out that many doctors were not familiar with type of dementia characterised by Parkinsonism, visual hallucinations made worse with opiates and cognitive impairment. Also, patients with Lewy Body dementia have episodes of unconsciousness – unrousable sometimes lasting 1 – 2 days. When they emerge they are often better and more lucid and rational so that to inexperienced staff it may appear that they are ‘playing games’ . With one daughter a head teacher and another a GP medical staff unfamiliar with this condition gave us a hard time on many occasions during the admissions for falls or when she was found unconscious. Eventually, we were able to have documentation which was shown to staff on admission or when having treatment and care in the community.

We made a life album with photographs of her whole life so that those caring for her had some idea of the life she lived and who had been important to her in her life. Often she referred to relatives and friends who had died many years ago so that it gave good talking topics when any family visited.
She had been living alone but when she was diagnosed she had lucid moments when we were able to discuss her future with her and reluctantly she was admitted to a specialist Care Home.
We were able to furnish it with her own furniture including the bureau contains photos and items she had saved over many years and a corner cupboard of trinkets that held many memories of holidays abroad and gifts from friends and family.
She took her own clothes , although I did find her trying to swap some with a neighbouring resident or offering her 1/6d (old money) for a dress of hers.
Moreover, she continued to carry her handbag and we took her to buy new clothes as she had always been very particular the way she dressed and in her last few months we bought her some new clothes and cheap jewellery and it was a joy to see her face. She continued to have her hair ‘set’ weekly until the  last week of her life.
We bought her make up and she loved it if any of the granddaughters put on her makeup or manicured her nails and wouldn’t change from ‘burnt orange’ lipstick. The grandchildren took their boyfriends/ girlfriends to meet her and she gave her approval often flirting with the boys and giving the advise she had given me as a teenager! She impressed them by demonstrating how she could ‘down a shot’ with a small cup of lactulose ( one way of getting her to take her medicine when she refused) She developed fears she was being poisoned (a common feeling in this disease) so we bought M&S sandwiches as she had implicit faith in their food -it worked!
She had always loved the garden and when the carers wouldn’t let her out she claimed they had put hosepipes on to pretend there was rain. Luckily I arrived in time and she was distracted and proceeded to tell me my brother-in-law had been put in prison for stealing a lot of money – £77.33 but I was able at that stage to tell her that she was confused and this was untrue and it was her illness and she gave me some insight as to how distressing things could be. That is why it was so important to visit to let her and the carers know what was fact rather than confusion.

Understandably, some people find it difficult to visit as what they see is too painful and as doctors usually we respect that ( you can’t take the person out of the illness ) and it can be difficult to come to terms with this condition. Also, if there was formally a strained relationship it is unlikely to change radically. I was fortunate that we had maintained a close, trusting relationship and was adamant that he should be cared for in a residential home situated near either myself or sister. Sometimes carers and those around a relative can offer more care and love than the relatives for all sorts of reasons and we as doctors try not to be too judgemental as we are often aware of those reasons.

When a well meaning carer sent me this video. It seemed hard:-

As my mother deteriorated and became less mobile we bought her an all singing ,dancing recliner chair so that she could be up in the day , wheeled to the garden she loved and sleep comfortably and eat her meals sitting up.

She was our mum who loved life, enjoyed a party and annoyed us in the same way. Latterly she was unable to walk so we used a wheelchair to take her out, the grandsons often wheeled her and she loved them doing wheelies and the last photos are with the family she loved laughing, singing but gradually these occasions became less and less she slept more until one day she went to bed said goodnight with the pictures of her two new great grandsons by her side and passed away peacefully. We played her favourite music and put on her favourite perfume and with hair ‘set’ and make up on she died in dignity.

image  More information concerning Lewy body Dementia
http://www.lbda.org/content/intro-to-lbd.

We had many times of anguish sometimes feeling  the doctors were being unhelpful and wanted to hasten her end before we were ready but often they were very empathetic and supportive. The carers were variable some cared better than others just like real life and as a family we learnt so much and witnessed how care of patients with Dementia has improved considerably.
When they are first diagnosed it may be appropriate to fulfill certain ambitions. My mother wanted to go to Weymouth as it had many happy memories for her and we had a wonderful day on the beach , paddled in the sea, ate ice-cream and talked about those happy days when we were all children. She wanted us all to be together as a family and we arranged this on several occasions.
It is so important if possible that the family keep in touch let carers know about the life of that person and fight for their dignity, plan their future whilst they can have a say and as the rainy day has arrived for them spend the money on what makes them happy and comfortable don’t hesitate , arrange to fulfill those ambitions as far as possible.

image        There are escorted holidays at accessible holiday centres arranged by the                                     organisation Vitalise

http://www.vitalise.org.uk

Many places have gatherings for carers and the patient with Dementia eg the Royal Academy of Arts has an afternoon where they discuss great masterpieces with them over a cup of coffee – the Art student who told me about this said that the patients with Dementia were totally inhibited and their remarks proved to be both amusing and honest!

This event is part of InMind at the RA, a programme of events for individuals with dementia and their carers or family members.

https://www.royalacademy.org.uk/event/coffee-and-conversation-sessions-3

Eventually as with many people as they age their world shrinks and they prefer to remain their home environment and enjoy simple comforts

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