Surviving the Dementia Epidemic
By a group formed to save local councils from the looming crisis

Dementia is one of the main causes of disability later in life, ahead of cancer, cardiovascular disease and stroke. Only 43% of people living with dementia in the UK are diagnosed.

A few facts from alzheimers.org:

• 1. Right now there are 850,000 people diagnosed with dementia in the UK.
• 2. Numbers of individuals diagnosed with dementia are set to rise to over 1 million by 2025.
• 3. One additional person is diagnosed with dementia every 3 minutes.

How much does it cost the country?

For every person living with dementia, the annual cost to the UK economy is £30,000 (£25.5 billion total) and yet only £90 per person (£76.5 million in total) is spent on dementia research each year: that's just 0.3% of the total expenditure.

Cancer Research UK spent £423 million on cancer research during 2017/2018.

A 2015 report from Carers UK and the University of Sheffield reveals that the 6,800,000 million people who provide unpaid care for a disabled, seriously-ill or older loved one in the UK save the state £132,000,000,000 billion a year – close to the cost of a second NHS.( https://www.carersuk.org/news-and-campaigns/news/unpaid-carers-save-the-uk-132-billion-a-year-the-cost-of-a-second-nhs )

As a group we see the need for a comprehensive campaign to encourage and support the home carer. It should explain the advantages to both the person living with dementia and the home carer.

For each person persuaded to 'home care' instead of committing their loved one to a funded or partially funded home the saving to the local authority is some £19,411 per annum or £373 a week.

It's clearly in everyone's interest for the home carer to succeed in their mission to offer care at home and it'll certainly benefit the economy and help see us, as a country, manage to survive this epidemic without losing our shirts.

Needless to say, home care is definitely the first choice of the person living with dementia. Many are ‘tricked’ into care home living by being told that they need to move out ‘temporarily’ whilst the house is being renovated.

Dementia is stigmatised.

In many cases, dementia sufferers are hidden from view to avoid the families from being ‘shamed’. Sufferers might be housed in rooms out of sight from passers-by, or abandoned in care homes far away from their families. (I know of one person living with dementia who is abandoned in a care home by her family who live just a stone’s away!) They are stereotyped and viewed as a burden. Not only are sufferers blamed for their condition, they are frequently viewed as undesirable and, all too often, regarded as sub-human. Consequently, to some people, sufferers are socially unacceptable. This excludes the person living with dementia from most social activities: loneliness, withdrawal and isolation follow. Having to cope with declining cognitive abilities, often accompanied by decreased mobility, and with stigma destroying the person living with dementia’s self-esteem, the person has little chance of maintaining an even keel.

"I just don’t know what’s happening to me. I don’t know what I’m doing or why I’m here. Please don’t tell anyone I’m like this," a shaking, terrified resident whispered to me in a care home in Hampshire.

Many people living with dementia perceive their status in society has bottomed out due to the disease, and this probably explains the reluctance of many to accept the diagnosis. It places the unwelcome label fairly and squarely on the individual. It might also partially explain why only 43% are diagnosed. Fear of the stigma also prevents many who might be diagnosed and their families from going for help.

When the GP of a well-to-do dementia sufferer ‘phoned while I was visiting, the person living with dementia told the surgery they must have the wrong number. He loudly proclaimed there was nothing wrong with him and suggested they had their records muddled. He knew that both people sitting with him were fully aware of his diagnosis. But even more important was his awareness of the stigma and prejudices associated with his condition.

The conclusion reached by a recent study into false perceptions of the disease suggests that stereotyping may only be corrected by a large-scale campaign, with a sizeable contribution from the private sector and some government cooperation. At the moment the worldwide cost of dementia is estimated to be in excess of US$600 billion. The financial incentive should also exist.

It’s also forecast that one in three of us here in the UK will die of dementia after reaching the age of 65. And dementia doesn’t discriminate so there should be a preventative incentive as well.

"Overcoming stigma is the first step to beating Alzheimer’s disease and dementia", says Professor Baron Peter Piot, Director of the London School of Hygiene & Tropical Medicine and Professor of Global Health.*

We largely overcame stigma in our fight against AIDS discrimination so it’s acceptable to be optimistic about the possibility of correcting people’s beliefs and understandings of dementia. This, in turn, will improve their attitude.

The goal is not unrealistic.

* World Alzheimer Report 2012