Dementia for carers

Posted on: 23 March 2016 by Mary Jordan

Mary Jordan, our dementia expert, cautions carers against imposing what they think is best for the person they care for.

Full-time dementia carer

If we are caring for someone with dementia we want to do our very best for them. But it can be difficult to know what actually is ‘the best thing’. Often people with dementia stop expressing an opinion or become unable to make their wishes known in the way they have done in the past. It can be very easy then to do what we feel is ‘the right thing’ without considering how they might feel about it.

Unconsidered caring

Washing and bathing are classic examples of this conundrum. Generally people tend to wash, bath and shower much more now than was done in the past. Some people shower up to three times daily and for many a daily shower or bath is seen as essential for keeping clean and fresh. People who have dementia often neglect to wash and shower or resist when this is suggested. This can result in a daily struggle as the carer tries to ensure that the person they are caring for ‘keeps clean’. The carer may feel that they are doing their best because they know that they themselves would want a daily shower. Being grubby or unwashed is also seen as a social solecism and the carer feels they must ensure that appearances are kept up. But the person with dementia may find that any attempt at assisting them to shower is a violation. After all, this is an action that most of us do in private and without assistance.  It may be timely to reconsider what actually constitutes ‘being clean’.

Retaining choice and control

Shopping and house cleaning are other areas where carers often impose help which people with dementia actively resist. A diagnosis of dementia can often seem like a complete loss of control over life. Carers try to address the areas where the person with dementia seems to be ‘failing’. It may seem very helpful to employ a cleaner or to take over the shopping. But taking away every day activities may leave the person with dementia feeling helpless and without employment. A much better idea is to ask (or employ) someone to help the person with dementia in a subtle way. Instead of ‘Sarah is coming to clean the house each week’ consider ‘Sarah is happy to help you with the heavier jobs (or the jobs you don’t like)’ and to make sure that the person you employ understands this subtle difference. Instead of ‘I’ll see to the shopping for you’ consider, “Let’s go shopping together’ so that you can oversee and direct in a companionable way whilst letting the person with dementia feel they have some choice and control.

Accepting changing behaviours

As people with dementia become less able it may become quite easy to steer them to behave as we would like or to act in ways that make life easier for us. Without realising it carers may make changes to activities which the person with dementia would resist if they were only able. It can be quite salutary for carers to stop sometimes and ask whether they are allowing the person with dementia to do the things they would actually like to do or only the things which are convenient for those caring for them. When carers say that the personality of the person with dementia has changed, should they perhaps be asking if their actions are causing the supposed change? As the condition develops the carer is likely to find they have more control and more power within the relationship. It may be a very hard thing to recognise that they could even be misusing their expanded power.

About Mary Jordan

Mary works for a national dementia charity and is an Associate Director of ELM (End of Life Management Ltd). She has had considerable experience of caring for elderly relatives and friends and worked in the NHS for 9 years. Earlier publications include books on Caring and on GP Practice Management, in addition to articles in nursing and social care journals and magazines.  Mary has published her new book this month by Hammersmith Books called ‘The Essential Carer’s Guide to Dementia’ and each month she will offer practical advice on how to deal with dementia.

www.maryjordan.com

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