Dementia and Care at Home



I dread the month of March. Wind blows, rain falls and, as the financial year end approaches, I receive a letter from the local council informing me that my 85 year old mother’s weekly home care costs have once again been massively increased.


In the three and a half years since my mother, who has Alzheimer’s Disease, began to receive home care, the maximum contribution approved by the Council has increased by 50% – from £400 to £600 per week.


Each year, when we receive the notification, I am left furious that we are given so little warning, in this instance of a 21% increase from £495 a week in 2007/08 to £600 in 2008/09.


This means that in the next financial year, my mother – who used to pay £23,400.00 a year for home care – will now pay an eye-watering £31,200.00. In addition, of course, she also has to meet the usual costs of running a household, such as food, gas and electricity, insurance, travel, repairs and maintenance.


Given the financial burdens upon elderly householders and the massive recent rise in fuel bills, it is astonishing that such a significant increase, should be issued with only 3 weeks’ notice. It’s true that a year ago we were told that the 2007/08 weekly payment of £495 would be “protected” for one year, but we were not informed until 18th March that the increase in 2008/09 would be so significant.


We have no recourse to appeal. My mother and father lived modestly throughout their married lives, were never in debt and regularly saved. As a consequence, my mother now has assets – apart from the house in which she lives – of over £22,250. Over this limit, which has been set by the Council, people requiring home care must pay the maximum contribution.


It is implied we should be grateful. The letter notifying us of the new charges informed us that this was a “protected figure for our (the Council’s) present clients” adding “Any new clients who start a care service after 7th April 2008 will have to pay up to a maximum charge of £750 per week”. I have to assume that next year my mother’s care costs will increase from £600 to £750 a week, some £39,000 per year.


The Labour government has for many years promoted the idea that care at home is to be encouraged, yet it has provided no resources to enable this. Despite the massive projected increase in the number of people with the disease and evidence of poor standards of care in many existing residential homes, there is no effective development strategy for specialised housing or imaginative home care options, such as home-share or supported cluster housing.


All the government has done is to oblige local authorities to assist with the home care costs of those whose assets are below a certain level and to set an upper limit for charges for those whose assets are above that level and are therefore, like my mother, self-financing.  Though the government requires local authorities to set this upper limit for charges, it does not oblige them to keep it at a reasonable level – or even to publicise the fact that it exists.


Over the past few years, though I have been critical of the level of the Council’s weekly contribution to my mother’s care costs, I have been very pleased to receive it – and very grateful to the kindly Council finance officer who told me about it. However, I remain bitterly aware that my mother was (reportedly) the first self-financing person to receive this limited right to financial assistance and that many others, for whatever reason, never apply for it. I cannot believe there are so very few people with dementia who also have savings.


The average cost of a care home for someone with dementia is between £408 and £669. This very expensive, but because it requires no additional expenditure on home-maintenance, is a far cheaper option than home care. Small wonder that as costs escalate, local authority budgets are squeezed, and impatient relations see their inheritance gradually whittled away, more and more people with dementia who could remain in their homes with high levels of care, are either being put at risk by inadequate levels of home care or are being encouraged into residential care homes long before they are ready.


My mother is not a wealthy woman employing a cook or housekeeper because she is proud or idle. She worked in her home all the years of her married life and in later life nursed my father through his last long illness. She has 24 hour care only because of the Alzheimers disease. Her care is provided at home because, when she was well, that is where she said she wanted to stay.


The illness eating away at her brain prevents her from living a normal life. She cannot prepare food or drink, administer her prescribed medication, run a bath, shop or boil an egg. She cannot safely be left alone, nor can she go out unaccompanied.


The social worker and I first arranged full time carers after she left a tap running and gallons of water poured through two floors into the basement flat of her house. I finally accepted she could not be allowed to walk even a short distance on her own, when, as we stood at a pedestrian crossing, she told me “The light’s red. We can go.”.


Experts tend to say that Alzheimer’s kills only in the final stages. However, this isn’t true. In reality, if there is inadequate care, the disease can kill at any time – by fire, electrocution, road traffic accident, infection and even dehydration and starvation.


Alzheimers is a terrible and so far incurable disease. Yet it is possible, with dedicated, skilled and compassionate nursing care, to prevent fatalities, impede the progress of the disease and for several years maintain a reasonable quality of life for the sufferer. Despite this, successive governments have chosen to act as if it were not a disease responsive to treatment and care.


The NHS has saved billions of pounds by maintaining the fiction that the essential and life-saving care provided to those suffering from the disease is not “nursing care”, but “personal care”. The reason they have done so is because nursing care, as a health service, is free to patients, while personal care is means tested and the responsibility of cash-strapped local councils.


This means that, other than in Scotland where personal care is free, the bulk of the responsibility and much of the enormous cost of dementia care rests with family members – most of them women.


Though I rail against my mother’s local council and the mean-spirited way it limits its contribution to home care, my real objection is to the Government. The Government has spent billions buying weapons and prosecuting bloody and sometimes illegal wars, but has so far refused to make any commitment to adequately fund the health care needs of patients with dementia.


Arguably, the attitude of successive governments to dementia has been not just callous, but also discriminatory to both women and older people. They have relied upon women’s sense of loyalty and family duty and the endurance of the elderly, to plug a scandalous gap in public health services. The cost in money, lost earnings, strained family relations and broken health has been incalculable.


My mother was once a keen tennis player and pianist, who read widely and was a dedicated letter writer. In retirement she attended classes at the Friends Centre, joined a women’s reading group, learned some French and began to paint.


Now she cannot remember which country she is in. She has forgotten my childhood and most of her marriage and cannot even sign her name. She cannot understand why her beloved parents do not come to take her home from the house she has occupied for 30 years, but often no longer recognises.


She is as sweet natured and gracious as she ever was, but she knows something is badly wrong. She strikes her forehead with the heel of her hand and says “There’s a hole up here…I’m dotty”. She adds sadly “I don’t want to be a nuisance.”


The phrase “to nurse” simply means “to nourish or care for”. It is time for the Government to accept that when care is needed to preserve health and life, it is indeed nursing care – and should be free at the point of delivery. 


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