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Caring for someone with dementia

“If she wants a Magnum lolly, she can have a Magnum lolly. In fact, she can have three if she likes.”

After the devastating diagnosis that Valerie’s 78-year-old mum Val had dementia, she shopped organic as per guidance she had garnered from Google that wholesome foods might make a difference to the symptoms. And as her mum’s appetite dwindled, she admitted frustration as she urged her to eat up the quinoa and spinach and Brazil nuts.   

But her mum craved sweet things like she never had before - one of the quirks of the disease for her - and the freezer is now full of ice cream.

Valerie said: “I didn’t want our time together to be about me moaning at her. She loves her lollies and to see her smile as well as knowing she has eaten something at least means everything.”

It has proved a very personal journey for Val and Valerie - as it is for everyone facing the disease. Seen as one of the cruellest of fates, dementia steals peace of mind, memories, independence and the person you have known and loved.

Dementia is now the leading cause of death in England and Wales, overtaking heart disease earlier this year. An aging population, better diagnosis and the fact it is now being given more weight on death certificates are all contributory factors.

Treatments are available and research and development surrounding those and the ultimate, a cure, continue. An estimated 850,000 people in the UK are living with dementia, as are those closest to them.

Jo, who cared for her mum Pam, 77, until she died 18-months-ago, said: “It is a thankless task as the person simply cannot thank you. You do it out of love and you know the person they were would be grateful, but it is hard.

“That said, there can be moments of happiness. Mum was always quite reserved, but when we sang nursery rhymes or found certain topics to talk about, she would open up and smile. You hold onto those glimpses and see what you can do to find the next one.”   

From their experience, Valerie and Jo have these thoughts on caring for people with dementia:

  • Friends and relatives often find it difficult to visit someone with dementia as conversation is challenging. Encourage them to bring along a game or activity so the focus is not on talking
  • The temptation might be to correct absentmindedness or highlight repetition, but particularly when the disease has progressed, that can cause confusion and anxiety so it becomes kinder not to
  • Pictures on doors at home can help people with dementia find their way - toilet, bed, TV for the front room
  • Don’t serve up boiling hot tea or coffee to someone with dementia - add cold water or plenty of milk
  • Avoid lots of questions. Instead opt for a fait accompli: ‘I was making a drink and made you one too’
  • To help ease frustration and agitation, play ‘release’ type activities such as throwing balls or water bombs down the garden
  • Link in with a local group for help and support – people who are experiencing what you are. And the specialist charity websites are a fount of knowledge and advice
  • Look at securing a lasting power of attorney (LPA) early on
  • Awareness is growing, but the general public might still not understand certain behaviours or outbursts. If you need to, don’t be afraid to calmly explain your friend or family member is living with dementia
  • Be kind on yourself. There is no instruction manual for this

Dementia is a term used to describe a number of different degenerative disorders that trigger a gradual loss of brain function - thinking, remembering and reasoning.

Alzheimer’s disease is the most common form of dementia, accounting for around 62 per cent of all diagnosed cases.

In most people, symptoms first appear in their mid-60s. An estimated 850,000 people in the UK have dementia, with the number set to rise to more than a million by 2021.

Dementia is not part of the natural aging process. If you’re worried about your memory, or about someone else, the first thing to do is make an appointment with the GP.

Short term memory loss is well-known, however, dementia can also affect the way people think, speak, perceive things, feel and behave.

This includes difficulty concentrating, problems planning and thinking things through, struggling with daily tasks like following a recipe or using a bank card, trouble finding the right word or keeping up with communication, an inability judging distances that goes beyond eyesight issues, mood changes and a lack of control over their emotions." 

It is a thankless task as the person simply cannot thank you. You do it out of love and you know the person they were would be grateful, but it is hard.

Copyright © 2017 Benenden Hospital Trust. The Benenden Hospital Trust, whose registered office is at Goddard's Green Road, Benenden, Cranbrook Kent TN17 4AX is a Company limited by guarantee, Registered in England and Wales, number 3454120, and is also a registered charity, Registered charity number 1065995. The Benenden Hospital Trust is a subsidiary of The Benenden Healthcare Society Limited.

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