Dementia can be a very distressing condition for the sufferer and for their loved ones. Often, especially in the earlier days of dementia, defensiveness and denial can lead to an individual refusing help.
This refusal of help can put you in an even more difficult position. You may feel powerless or that they are making things harder for you (and themselves). You may even feel that their unwillingness to accept help is a personal attack on you, or even may lead to them being in danger.
The first thing to remember is that, pre-diagnosis and in the early days, weeks and months of a diagnosis, refusal of help can be very normal.
There are two main reasons for this. Firstly, your loved one may be facing their memory problems with denial. It is distressing to know that your memory and cognition is failing, especially when you know that it won’t get better. A common response to this is denial and a refusal to accept that it is actually happening.
Secondly, they likely do not fully understand dementia and what it can mean. This lack of knowledge about the condition, combined with perhaps a lack of realisation of how it is actually manifesting because they are confused or cannot remember, can also lead them to believe they don’t need help.
They may also view accepting help as being a failure or a weakness on their part. If the individual has lived independently for their entire adult life, and perhaps even raised a family of their own, or held down responsible jobs, they may not be comfortable with being in a position of vulnerability where help is required.
Understanding the reasons why your loved one with dementia may be reluctant to accept help can help you realise it is no reflection on you or your relationship with them.
However, pushing back against help can be problematic for both the dementia sufferer and their carer. For example, they may insist on driving beyond when it is safe. Perhaps they are unable to keep track of their medication or leave a gas ring on. So how do you get them to accept help?
Firstly, try to understand that the push back against help will likely be coming from a place of fear or vulnerability. By showing your loved one that you understand their fear and are compassionate about it will make them more willing to be open with you and open to the idea of help.
Dementia can be particularly fear-inducing in the early stages of the condition because the individual may have times when they are as capable as they have always been and other times when they aren’t. They will also have more awareness of their state of confusion and cognitive difficulties than someone with more advanced dementia. Therefore, simply being aware of how they may feel can help.
Start by speaking to them kindly and about the memory problems themselves, rather than the help you want to give. Try to listen to how they feel and address this. You can then explain why you are worried about them and give tangible examples of problems that have arisen. For example, perhaps you can gently remind them of when they lost things, or forgot an important appointment.
Don’t bombard them with criticism, but do gently point out your concerns with facts. Ask them what you can do to help rather than impose your definition of help on them at this stage. Perhaps ask if you can accompany them to appointments or visit their GP with them. You may also find it beneficial to frame it in terms of how, by them seeking help, you will also be helped. This can feel like they are therefore doing something for someone they love, rather than something they don’t want to do.
Try to keep conversations about help and dementia itself short and simple. Repeat them if necessary, but don’t overwhelm the individual with lots of different concerns or issues. Instead try to focus on one or two issues at a time.
As a loved one or carer of someone with dementia it can feel futile to give the dementia sufferer time and space to ‘come around’ to the idea of help. This can be because you may feel that you are starting at the beginning each and every time you broach the subject, particularly when denial is rearing its head.
However, time and space is vital for someone with cognitive problems to gradually understand and make sense of their new sense of self and what this means for their future. By giving someone space to think things over they won’t feel pushed in to a corner where they will be more likely to metaphorically lash out, or reject offers of help.
This doesn’t mean that you have to do nothing during this time though. You may find it useful to keep a diary of the times when issues occur. This will help you identify if there are particular patterns to the way problems present. For example, perhaps they are good at remembering to eat but struggle to remember appointments. This will prove to be useful information for gently pointing out your concerns with tangible facts, but also in terms of identifying how you may help.
It’s absolutely vital that you keep things calm when discussing your worries and how you can help. Whilst your frustrations are understandable, unfortunately showcasing them to your loved one will only serve to make them more defensive.
You may find it helpful to enlist the help of others. For example, you may find that the individual’s GP can speak to them on your behalf, or if they have a carer then they may be more willing to listen to them.
It can also be useful to take steps to help someone without being explicit about why you are doing it. For example, you could offer to drive them to an appointment because you’d like to spend some time with them, not because you are worried about them driving. Such strategies can ensure they get help in the short-term whilst they are refusing overt offers of help.
In the long term consider specialist dementia care, for example at our outstanding North Devon and Somerset Care Homes. Being looked after by dementia care specialists can alleviate the burden of care for both you and your loved one.