When a loved one is living with dementia, it is inevitable that a time will come when they will need additional help and support. A person with dementia may be very resistant to any intervention from any individual, and who could blame them – ‘help’, however well-meaning, often results in taking over from the person with dementia and can be very disempowering, especially for a previously very independent person. Alternatively your loved one may be willing to accept help, but only want it from a particular person, which can put a huge strain on one individual.
Overcoming problems around how to provide help and support, and especially difficulties completing essential tasks like washing, dressing, eating etc, is something that huge numbers of family carers struggle with, and can even baffle professional care workers. If time is short, and the individual living with dementia is determined that what the person who is supporting them feels needs to happen isn’t going to happen, it can become a very frustrating battleground for everyone.
Alleviating those tensions can be difficult. As one family carer said to me after reading my ‘Troubleshooting Checklist’ blog post:
“How do you cope when someone is unwilling or unable to cooperate with these tasks? Our routine gets harder every day.”
The advice I gave that person is the inspiration behind this blog post, largely because I know from the correspondence and conversations I have had that that person is far from alone in experiencing these problems.
There are lots of things you can do to try and improve the communication and mutual understanding needed to avoid battleground situations over every day necessities. Lots of carers – be they family carers or professional care workers – often get locked into a very task-based day, and naturally take over doing tasks even when the person with dementia may be able to do some or all of these things themselves. I was guilty of this with my dad in the early years of his dementia – it is an incredibly easy pattern to fall into.
Often it’s just quicker and easier to do things for a person than support them to be independent. However, for anyone, and particularly a very independent person, this could be like red-rag to a bull. Put yourself in the shoes of the person with dementia – looking at it from their perspective it seems very controlling and disempowering for you to just take over.
Maintaining skills is a difficult balancing act. If a person is going to put themselves in danger or do something wholly inappropriate then some measure of intervention will be needed. Judging that measure, however, can only come from understanding the individual – through communication, body language, previous history, observation etc – anything that tells you what their capabilities are and where the points are that you may need to intervene.
Of course dementia is a constantly changing landscape, and abilities and the motivation to do things will fluctuate and most likely decline over months and years. The frustration the person with dementia is likely to be feeling during this decline cannot be overestimated, and any intervention you make needs to be very sensitively handled. There may be specific trigger points when you and the person you are supporting upset each other. It might be helpful for you to note these and see if a pattern emerges.
Once you’ve worked out what is triggering times of discord, you may be able to identify factors that you can change. For example, the environment you are in may be contributing to difficulties. A particular room, object, or sensory experience could be a problem. The routine you are using may also be problematic, even if it’s a routine that has been in place for a long time. Or the problems may be down to a breakdown in communication.
An example to illustrate this:
You are helping a loved one to dress. Your loved one has always got dressed in the bathroom after their morning wash. Your loved one is now resistant to dressing but is struggling to communicate why in a way that you can understand. Examples of possible problems include:
1) Looking at the bath/shower, your loved one is associating the bathroom with getting undressed for washing – they simply cannot understand why you would want them to put clothes on, rather than take them off.
2) Your loved one doesn’t recall having a wash so cannot understand why clothes should be going back on.
3) Your loved one opened their bowels prior to having their wash, there is a lingering smell and they don’t want to dress because the smell is suggesting to them that they need to wash.
4) They haven’t completed their pre-dressing regime in the way that they would want to – IE: don’t feel dry enough, want to apply a body lotion, or would like to do their hair or make up before getting dressed.
5) In your small bathroom there isn’t enough room for you and your loved one to manoeuvre to help them get dressed, this is making the space claustrophobic, possibly too hot, and you are getting in each other’s way, causing mutual frustration.
All of the problems described above are centred around association and memory. The environment you are in is causing a negative association. Try changing the established routine and moving to another room to dress – ensuring that room is warm enough. The bedroom, with an open wardrobe and different outfits to choose may help to demonstrate that it’s time to get dressed.
Of course the above is just one example – I could write up many, many more – every individual situation is going to be slightly different and require a different approach.
A general checklist for multiple situations would include (in no particular order):
1) Think about the room(s) where you are trying to help the person (do they feel safe/comfortable?).
2) Don’t ignore sensory barriers – noise can cause confusion, smells and the visual landscape can give mixed messages.
3) Experiment with routine if the current one is not working.
4) Be mindful of timing – the time you chose to do something may not be the time that the person you are supporting wants to do it. If schedule is vitally important, try to agree the schedule together and have a dementia friendly clock to help orientate the person and avoid conflict over what time it is.
5) How much are you involving the person in tasks – would they like to/could they do more? Or would they like something done differently?
6) Think about how you are communicating – is it appropriate, can it be understood, do you need to change how you are communicating?
7) Use clear clues to indicate what the person needs to be concentrating on – IE: open the wardrobe to choose clothes to wear, set the table before a meal, take towels and washing products to the bathroom in readiness for a bath/shower, collect up coats, hats and shoes ready to go out.
8) Think about how you are helping the person, are there any particular trigger points for upset (observe/document and you may see a pattern emerge that you can change).
9) If someone else is available to help (another family member, friend, care worker etc), find out from the person with dementia what their preferences are. Also consider if you need extra help in certain situations (help with moving and handing etc), and if certain tasks should be completed by someone else while you take a back seat. Be particularly mindful of cross-gender issues, dignity and privacy.
10) Remember that what needs to be done (like getting dressed) doesn’t exist in isolation from other things. For example, feeling unwell, being in pain etc are going to have a huge bearing on how someone concentrates on what needs to be done, their willingness to help, and the movement and mobility they have. A person with dementia may not be able to articulate how other illnesses or pain are affecting them, so as a carer you need to be a bit of a detective.
Taking the person-centred, holistic approach described above should help to alleviate most issues around offering help and support to a person with dementia, but like everything in dementia care there are no guarantees and the role of a carer is likely to be constant trial and error. As ever, patience and empathy are vital. I’m not sure it ever gets easier, but what I can say is that with time you become more perceptive and an infinitely more effective detective.
Until next time…