Married to Alzheimer’s

I now find my husband less willing to engage with group activities

Steph Booth with husband Tony on Alnmouth beach, about an hournorth of Newcastle-on-Tyne in Britain. The couple rented a cottage there for a week. Photograph: George Skipper

Steph Booth with husband Tony on Alnmouth beach, about an hournorth of Newcastle-on-Tyne in Britain. The couple rented a cottage there for a week. Photograph: George Skipper

Tue, Jan 21, 2014, 14:25

In the past few years European governments have harangued their citizens over the need for austerity and a consequent willingness to accept damaging cuts to social and welfare budgets.

We are told by government that anyone out of work is a drain on the national economy and, as such, is responsible for all our current financial woes.

But the cold reality is that for many reasons this is far from being an accurate assessment. Where, for instance, are the figures for the number of people who are full-time carers and are not in paid employment? They are the souls hidden away from public view, helping to maintain the fabric of society by caring 24/7 for some of our most vulnerable.

Should they also be held responsible for the greed and incompetence of the international banking system?

I know I speak for many people caring full-time for loved ones with dementia when I say, first comes the stomach-churning shock of diagnosis, swiftly followed by the overwhelming realisation that life can never be the same again.

Household budget
As dementia progresses, the load of responsibility for organising day-to-day life is, in many cases, shouldered by a sole carer. One of the heaviest burdens is the household budget. No matter how much we strive to hang on to “normal” life we may as well try to grasp the wind. Adjustments have to be made. Some are minor, others more serious and demanding.

Government policy, rather than recognising the actuality of the carer’s invaluable contribution to health and social wellbeing, appears to be predicated on the notion they are a drain on welfare budgets.

Consequently, many carers are confronted with the collapse of income. Poverty, or being seriously hard-up, is the lived reality for many carers.

Caring for a dementia sufferer is a 24/7 demand, making the usual routines and expectations of paid employment out of reach for many. Household income becomes based on welfare benefits – considerably less than the average salary.

I suppose it comes down to a question of how we define employment and, further, how we choose to share the financial burden of caring for others. Not just how much money is in the pot, but how that money is best spent.

Finnish research, published in August 2013, demonstrates that care of the elderly, consisting only of formal care, costs the state €25,300.

A combination of formal and informal care is €22,300. If a person receives mainly informal care from a co-resident family member, then annual state expenditure is reduced to a mere €4,900.

There can be no sensible argument against adequately funded informal care having a key role in formulating policies for long-term care.

Families who choose to provide care for their elderly relatives have a significant impact on long-term care costs.

Vast sums of money are spent in the UK and Ireland on residential care for the elderly. Would it not be infinitely preferable to divert some of that money to home-based carers to give both them and the dementia sufferer a better quality of life?

Enhancing the income of carers would greatly improve their circumstances and yet still be considerably less costly to the state. A fair income for carers would not only ease fiscal but also social and emotional pressures.

Living in a situation where every penny counts is not conducive to a positive atmosphere.

Research by Alzheimer’s UK has shown activity can help to slow cognitive decline. There should be the financial leeway to allow social activity to take place.

Change of surroundings
I now find Tony less willing to engage with group activities, but the jaunts we take together he enjoys. I do find changing his surroundings helps to animate him. We enjoy gardens, art galleries, walks along the coast – that kind of gentle, non-demanding activity. I also find if lunch is part of the excursion, issues about him not eating tend to disappear.

I know I am lucky to be able to do this. I have lost him on a couple of occasions – dementia carers, beware the lavatories with two exits. It can be fairly embarrassing loitering by the gents and asking someone to check out the latrines.

I believe that alongside the vital research into causes and best treatment of Alzheimer’s, there has to be a rethink of the social and economic strategy for coping with this disease.

I go back to my point about the best way to spend the pot and the need for compassionate, innovative and forward-thinking policy-making.

Steph Booth lives in the north of England with her husband, the actor Tony Booth, who has Alzheimer’s disease.

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