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Dementia Awareness Week

Like so many sufferers, Joan and Gracie are both under 24-hour care after endangering their lives and putting their families through agonizing worry. From leaving taps running and stove fire burning to wandering to the shops wearing pyjamas and sitting at the bus stop at midnight waiting hours on end for the bus.
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"I must go home now," 92-year-old Gracie tells me with a great sense of urgency, "my mum is waiting for me."

"Is she waiting for you Gracie?" I ask the frail, dementia-stricken former nurse as her eyes wander furiously around her bedroom, "I should think so," she replies, "come on... my mum said to come straight back," she sweetly rushes me.

Like so many dementia sufferers, Gracie often reverts to her childhood and relieves moments with genuine joy as well as sadness. Just last week I met 84-year-old Joan who with a heart-melting smile told me: "Nobody loves me more than my mum."

Like so many sufferers, Joan and Gracie are both under 24-hour care after endangering their lives and putting their families through agonizing worry. From leaving taps running and stove fire burning to wandering to the shops wearing pyjamas and sitting at the bus stop at midnight waiting hours on end for the bus.

"It is all terribly worrying," says Joan's husband Paul, "but the scariest thing is when she goes missing. Police once found her in a field hours after she went missing, she had no idea how she got there, we nearly died of worry... needless to say she is not allowed out of the house by herself anymore."

Ahead of Dementia Awareness Week, starting on 20 May, I speak with Dot Gibson, National Prescribing Centre (NPC) general secretary and start by asking about her headline-making objection to police using GPS devices to track people with dementia.

Q: Can you please clarify your position on the use of GPS devices please?

A: Fitting a GPS device to people with dementia is like using sticking plaster to hide the crisis in health and social care. This is what I said in media interviews following the news that more than 100 local authorities are using GPS devices to track people with dementia and now Sussex police have adopted the scheme to save money when they are called out to find a missing dementia sufferer.

My views provoked stressed relatives to say that I was out of touch; they welcomed a tracking device for their loved-ones who could wander off alone. I understand: my confused mother-in-law was often found outside a shop at midnight wanting to do her shopping. So whilst I completely understand the feelings of those who wish to protect their loved ones in this way, the whole area of how we look after those who can no longer look after themselves needs a wider response than simply looking at tracking devices. That can only be one part of a much bigger response. However, no-one wanted to widen the debate - they just wanted to focus on the single issue. But family carers deserve more.

Our main concern is the crisis in the health and social care system. Over 15 years, 20 commissions and other inquiries, including a Royal Commission into long term care have concluded that the social care system is not fit for purpose. Undercover journalists issue shocking reports which hit the headlines for a day or two, and then the story disappears.

Q: Relatives of dementia sufferers have welcomed the greater freedom this technology brings as well as the relief knowing those missing can be found, what would your argument to them be?

A: Successive governments designate the needs of dementia sufferers as personal and not medical and so only entitled to means-tested social care, meaning that many end up selling their homes to pay for this or are forced to use up all their savings. Inadequate research into dementia, lack of nurse and care-worker training, leave relatives finding it more and more difficult to cope; they often have to enter into a long and arduous process to get respite care, and feel guilty for even considering assistance to care for their loved ones.

This means that unless they are rich enough to buy personal, professional 24-hour care, people with dementia are often limited to one or two visits a day to help them bathe, eat and go to bed. Visits can be just 15-minute slots with a different carer each time; there is no time for the compassionate and person-to-person contact which a dementia sufferer badly needs; often put to bed as early as 5.30-7.00 pm the dementia sufferer will wake up in the middle of the night thinking it's morning.

Now we are seeing cuts in staff at sheltered housing schemes and the closure of day centres, luncheon clubs and the like where older people get together socially, have sing-songs, reminiscent sessions and organised coach trips etc, which help to overcome loneliness and give family carers a chance to relax. These cuts are now putting family carers under even more pressure.

At the end of this tragic set of circumstances local councils and the police understandably are turning to the use of GPS devices to pick up the pieces. But this could be open to abuse. How far could it be extended? Who decides; who provides and who pays for it? There must be proper regulation to stop abuse of human rights but who will regulate? There must be consent, but the individual can only give this in the early stages of dementia.

Q: What in your mind are the most burning issues for pensioners today?

A: There has been a lot of nonsense talked about how older people have been spared the effects of the austerity measures and cuts in government spending. Somehow they are being portrayed as if they are getting special treatment at the expense of younger generations. Not only is this completely untrue, it is also extremely divisive and dangerous. All ages have been affected.

Older people have seen their pensions devalued through the use of the Consumer Price Index, the winter fuel allowance has been cut, many bus services have been either reduced or withdrawn altogether causing particular problems in rural areas, tax allowances have been frozen for the over 65s, and social care budgets have been cut by up to 30% so that at least a million people are now unable to get any support at all, while the rest struggle on trying to cope without the help they need.

Around one in five pensioners has an income that is below the official poverty level, three million households are classed as being in fuel poverty, 800,000 are denied social care at home whilst many more are worried about the cost and quality of care that they do receive and every year over 20,000 die from cold related illnesses. All of these issues need addressing if we are to improve the lives of both today's and tomorrow's pensioners.

Q: if you were to meet David Cameron tomorrow what would your message to him be?

Don't see older people as the problem, but an asset. Every year pensioners contribute £40bn to the economy more than the state pays out in pensions, benefits and care - through paying taxes, volunteering and unpaid caring. Benefits such as the bus pass actually make economic as well as social sense. For example, it enables pensioners to keep mobile and independent, saving the NHS money, but it also gives them the opportunity to continue making a contribution in their local communities. These benefits need to be kept - not means-tested or withdrawn.

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