What Is A Cost?

Submitted by tonyplant on October 16, 2006 - 12:22.

There has been a lot of discussion about the NICE decision to block the prescription of various drugs in the early stages of Alzheimer's Disease.

For one thing, they do not just benefit the patient but also the carer, which actually halves their true cost to £1.25 a day – or about the same as four cans of cat food.

If you look at the wider picture, take the drugs away, and carers will not be able to support their loved ones as long as they would choose to do so. Sufferers will be forced into care homes, which cost on average £500 a week, much sooner. Now that is not good value for money – compared with a week's worth of pills for £16.50.

The article quotes the conventional wisdom that carers save the country £57 billion. Caregiving exacts its own high-price toll. It is easy to demonise groups who don't agree with us but it is impossible to believe that the very smart, thoughtful and even altruistic (why else go in for a career in public service) people who work in the relevant government departments don't know this. They must know the cost of doing nothing. Presumably these people know all about how to appriase not only the financial costs and clinical benefits but the wider, human costs and those that are more indirect. Are we failing to have a conversation about the costs because we would not like the conclusions or the outcomes? If we can't be involved in these decisions and discussions, how else are we ever going to understand the decisions that are made on our behalf about rationing decisions and the treatment of ill or elderly people and their carers?

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Tony Robinson and The Costs of Caring

Submitted by tonyplant on March 29, 2006 - 16:27.

Tony Robinson filmed a documentary about caring for his mother, who had Alzheimer's: he generously gave an interview and Q&A session about his caring experiences to Times Online. One of the comments that Robinson makes is that

care workers need better pay, more training and a proper career structure.

In the course of the programme, carers frequently raised the issue of how angry they were about the inadequacy of the Carers' Allowance. Juxtaposed to Robinson's above recommendation for care workers, its seems as if carers get substantially less pay, no training, and that caring destroys their own career structure. One striking example of this was Janice Marrs. Marrs revealed that she had given up a well-paid, senior post to care for her mother. Along with the job and salary, she gave up many of her pension arrangements and other necessities that would have given her security in her own future. She made the cogent point that she is paid just £45 a week to care for her mother for 24-hours a day. "Sometimes I'm up four times in the night - why is it just because she's old and very ill that I'm written off as well?"

Marrs contrasts her payment with that of Foster Carers, who she said receive £250 per week. I take her point as to the difference in treatment, but I'm not sure that the seeming animosity displayed towards the comparatively generous allowances awarded to Foster Carers on the Carers UK forums is appropriate, galling though many of the comparisons must be (particularly that a Foster Carers Allowance is paid per child, but a Carers Allowance is fixed, irrespective of the number of people for whom one cares).

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The varying health costs of caring

Submitted by tonyplant on December 15, 2005 - 17:54.

A study suggests that the type of assistance that Carers provide is linked to the amount of stress that they experience. Interestingly, the authors report that Carers who are coping with matters such as financial management or medication scheduling on behalf of others report more stress than those who are meeting physical needs.

To watch someone, particularly a parent, lose cognitive abilities so that they cannot do the 'thinking' tasks that they used to, is very hard on the caregiver emotionally—and often is actually more stressful than assisting with the more physically demanding tasks such as bathing or cleaning.

Unsurprisingly, many Caregivers feel increased sadness, irritability, fatigue and guilt. Feelings that are typically regarded as features of chronic unhappiness and precursors of chronic depression. The authors surveyed Caregivers and asked what they thought would help them. Carers stressed the need for practical, real-world assistance that would help them to manage their situation. The least favoured options were psychological counselling, group therapy and support groups.

Hmm-from my family experience, it can depend on the support group. I know that the Alzheimer’s Society runs an excellent network of Carers' groups that can be a one-stop shop for advice on local resources, how to apply for Carers’ Allowance and how to navigate someone through the health care system. My local branch offers a drop-in service on several days a week where Carers and the Care-Recipients can go and meet others, laugh and share stories. Similarly, my local Stroke Association offers a variety of services and different flavours of support.

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