Health

Dealing with dementia: Your stories

  • 11 December 2013
  • From the section Health

The UK will aim to double its annual funding for dementia research to £132m by 2025, up from the 2015 target of £66m, Prime Minister David Cameron has said.

Mr Cameron made his announcement at a dementia summit in London, which is being chaired by Britain, as part of its presidency of the G8.

The number of dementia sufferers worldwide is expected to treble to 135m by 2050.

Here, BBC News website readers and BBC Breakfast viewers with experiences of dealing with dementia share their views and stories.

Hannah Nicholls, Torquay, Devon, UK

Both of my grandmothers and one of my partner's grandparents suffered and died at the hands of dementia.

I watched as the two most beautiful and strong women in my life were reduced to a mere shell of there former selves.

I am passionate about finding a cure and more support for people living with, and dying from, dementia on a daily basis.

People try and ignore it and don't understand how terrible it is and how it affects the whole family of sufferers.

When someone with dementia dies, they are not the same person. It is quite an emotional journey.

My partner and I, along with my 14-year-old daughter, raised money by walking 26 miles for the Alzheimer's Society earlier this year.

I also work in elderly residential care, which is not specifically for people with dementia and Alzheimer's, but there are some people with dementia who may not have been diagnosed.

So I am excited by the G8 meeting on dementia and hope that there can be a real plan put in place and hope for the future.

The whole approach to Alzheimer's and dementia must change. We are all responsible for the care of these unfortunate people and attitudes must change.

Lorna, Southampton

My 78-year-old mother has been diagnosed with dementia, but it was noticeable well before her diagnosis.

My father, who is 80, is her carer. He suffers daily with emphysema and suffered a mild stroke earlier this year.

When we asked the Alzheimer's society and the adult social care team about arranging an emergency care plan for my mother, they said they cannot do anything unless my mother signs an agreement stating she has dementia and my father is her carer.

The huge problem is that my mother does not and will not admit she has dementia. She refuses to let nursing staff into the house and will not take her medication.

It is difficult as a family to step in as she gets angry and shuts down if you mention dementia. You cannot have a proper conversation with her and she no longer remembers her grandchildren, or which day or year it is.

I'm just pleased she still knows who I am. I am one of four children, who all work and do not live nearby.

We are worried that my dad really cannot cope and mum will have to be sectioned one day.

The system doesn't seem to account for this scenario. Whilst we are pleased dementia is now being discussed, it is so frustrating that this side of the disease is not shown.

Alex, Elgin

Both my grandmother and grandfather suffer from Alzheimer's disease.

While discussing increasing funding is good news for those who will develop dementia in the coming decades, much more can and should be done to help family carers who are often unrecognised and ignored.

I currently work full time but spend at least 25 hours on top of this caring for both my grandmother and grandfather.

Recognition and financial help for part-time carers would go a long way towards reducing costs to the NHS and reducing the social and financial costs to immediate family.

I never expected to have to care for my family as a 25-year-old and as a biology graduate I hoped to take the fight to dementia in my career, through research.

I feel let down by the government, who should know that many people are having to give up promising careers to care for their relatives. For many, the impending crisis, is all too real now.

Edward, Whitstable, Kent

Scan of a brain of an Alzheimer's patient which shows significant signs of shrinking compared to a normal brain.
The brain of an Alzheimer's patient (left) shows significant signs of shrinking compared to a normal brain.

More attention and consideration needs to be given to the impact dementia has on carers.

I cared for my mother with dementia for several years and it had a substantial impact on me as a carer.

During the period I cared for her, I continued to work. It was a demanding, responsible job and the only support provided by my employers was an agreement to progressively reduce my hours to allow me to care for her.

In the final two to three years, she was doubly incontinent and I was frequently up at night with her, but still attended work. Any days off as a result of her health and care issues, were usually taken as annual leave, not special leave. There was very little in the way of concessions.

During this period there were constant battles with social services for extra care. This frequently resulted in me paying out the same amount for private carers as I earned that day, so I worked effectively for nothing.

I managed to eventually succeed in seeking continuing care for my mother, but it was a hollow victory, because a few months later, in March 2008, she died.

In her last few months, the carers who had cared for my mother through social services for several years, were prevented from continuing because the contract for the care had to go to another private care company.

This distressed my mother in her final months and added to the family's strain.

Interviews by Stephen Fottrell.

A selection of comments from BBC Breakfast viewers:

Steve writes: "We also need to raise awareness of the fact that dementia is now affecting younger people and is not just an older person's disease, as most people think.

My partner, who is now in care, was diagnosed with Frontal Temporal Dementia at the age of 37.

Two years down the line, she now needs constant care and none of the drugs to help dementia sufferers work for her form of the disease."

Pauline writes: "My Mum is a dementia sufferer. I'm hoping the level of care dementia sufferers receive in their home will be addressed at this summit.

We are dealing with our second care providers, because the level of care wasn't acceptable with the first one. To say the training is inadequate is a big understatement. The vast majority of the carers have no understanding or knowledge of the condition.

We were told we would have regular carers, so my mum could get used to them and the carers get used to her. But, recently we have had 11 different carers in 12 days."

Alexandra tweets: "Dementia is my dad sitting in his care home looking at a door waiting for my mum, who died a year ago."

Helen writes:"There is not enough help for carers and families of dementia sufferers."

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