Expert advice from former dementia carer, NHS expert and medical writer Mary Jordan.
Mary Jordan has first-hand experience of dementia through caring for relatives and through her work for Alzheimer’s Society. She also has many years of experience working for the National Health Service and in the field of medical publishing. She is an associate director of ELM (End of Life Care).
Our founder, Christina Neal, interviewed Mary recently and asked her how to cope with common, difficult situations that arise when caring for a loved one.
What advice do you have for a dementia carer when they notice that a loved one who has dementia is refusing to accept support that they need with daily tasks, such as housework and self-care?
The first thing to keep in mind is that people with dementia have problems remembering.That seems so obvious doesn’t it? But a loved one with dementia may refuse to accept help because they cannot see that they need it. They have always managed their self-care and daily tasks in the past and they believe that they still do. You may think it clear that they have not been vacuuming, washing their hair or doing their shopping recently but they only remember that they have always done this and (because it is the short-term memory which goes first) they think that they are still doing it. It is very unlikely that you will convince them otherwise.
Although sometimes people are aware that they are having cognitive problems it is usually those around them who notice. That is why the campaign which used the slogan ‘Worried about your memory?’ had very limited success. It is probably true to say that anyone who says that they are worried about their memory doesn’t need to be. This is why it is difficult to get anyone to ‘admit’ that there is anything wrong. People with cognitive problems really do not realise that they have cause to worry. For example, if they mislay something, they do not think it is their fault. When the purse is found under the bed, they are convinced someone else put it there because if they had done it, they would remember – and they don’t!
If you are feeling that the burden of care is all on you, and you want the person to accept support in order for you to feel stressed, is it worth explaining this to them or do you think they will lack empathy because they are in their own world?
There is one concept which carers may find hard to accept but if you can truly understand this you can handle situations better and become less stressed. When someone has dementia, it is the logical and reasoning part of their brain which deteriorates most. This means they find it difficult to understand a reasoned argument or a logical explanation. The part of their brain which governs feelings and emotions is much less damaged initially and this can mean that emotion takes the ‘upper hand’ in a difficult situation. Empathy is logical rather than emotional because it requires us to understand another person’s point of view. It is sad that empathy for others is often one of the first things to go.
If you try to explain that you are becoming stressed due to your caring role your loved one is likely to feel quite hurt (emotion) although they will not understand the cause of your stress (logic). The kind of response you will be likely to get if you try to explain your stress is ‘I can manage. I’ve told you I don’t need your help.’
If you can see that a loved one isn’t coping, is it worth just taking the decision to go ahead and bring in help and support in any case, in the hope that they will get used to it?
It is always worth trying to get a loved one to agree to accepting help in the first place but in the end going ahead is often the best course. Your loved one may resent your ‘interference’ at first, but they are likely to accept the help and support after a while.
As a general rule people, with dementia will eventually accept the situation and may even become convinced that they organised everything themselves!
For example, my mother in law was furious and sulked for a couple of days when I organised a daily visit from a carer but after a fortnight the carer was her best friend and when she went on holiday was badly missed.
A lot of conversations with the person that involve decisions can be forgotten by them. For instance, my mum agreed to accept a carer coming in but had forgotten the conversation the next day and accused me of doing things behind her back and not consulting her. What is the best way to handle this sort of situation?
This takes us back to the missing purse! Of course your Mum thought you had gone behind her back because she certainly didn’t remember agreeing to have care coming in. This is a big difficulty because even if you showed her some proof (such as a written agreement or a recording of the conversation) she still wouldn’t be able to remember what happened and truly if you don’t remember something you think that it hasn’t happened.
It is best to stay calm – easier said than done – and stick to the ‘stuck record’ approach. Be ready to repeat several times calmly and without raising your voice or allowing an argument that your loved one agreed to the arrangement and that now it has been made it cannot be cancelled. I find that a suggestion that it has ‘already been paid for’ often works. You can also suggest that now it has been arranged and paid for she could just ‘try it out’ and you can discuss how things are going after a sensible time lapse (six weeks is a good as it gives time for someone to get really used to help).
Do you have any other general tips and advice on encouraging a loved one to accept help and support when they clearly need it?
Accepting help is often seen as a sign of ‘getting old’. I have a friend who will not allow me to help her pack at the supermarket checkout because she says it makes her feel old – and she is not yet in receipt of her pension!
One way around this is to introduce help for some specific reason that is nothing to do with being old or forgetful. For example, meal deliveries just until the cooker is repaired, a cleaner for ‘a few weeks’ until Dad gets over his fall, a trip to the hairdresser as a beauty treatment present, a visiting carer because you are going on holiday, shopping deliveries because your car is being repaired and you cannot bring the shopping. Sometimes you can suggest that ‘the doctor’ or some other authority figure insisted on the help. For example ‘they’ll only let you come home from hospital tomorrow if you have help for a few weeks.’
It’s important to remember is that no one likes to think they are frail and helpless – even if they are – so allowing your loved one some dignity by giving a specific reason (which doesn’t imply being old and doddery) is kind and thoughtful and may work like magic.
If you are new to caring, you may consider some of this advice deceitful to the person you are caring for. There is nothing to prevent you attempting to reason carefully and persuade your loved one as you would someone who does not have dementia. But keep in mind that it is important to always act in their best interests.
More about Mary
Mary qualified to deliver the Alzheimer’s Society CrisP programme which specifically caters for family carers and is QCF assessor in vocational achievement for Dementia. She is now a director of AdaptDementia Ltd (www.adaptdementia.com) set up to help people develop a better understanding of dementia. Mary’s ability to use her first-hand experience to illuminate points in the training make her an inspirational and motivating trainer.
Mary is also known for her books The Essential Carer’s Guide, the award-winning End of Life, The Essential Guide to Caring, The Essential Carers’ Guide to Dementia and The Essential Guide to Avoiding Dementiaas well as The ‘D’ Word co-authored with Psychiatrist Dr Noel Collins. (Hammersmith Press).
For more information, visit www.maryjordan.co.uk