Coping with denial in dementia
Being diagnosed with dementia is a hard-enough time for any person and their loved ones, but what can you do if the person refuses all offers of help and support? It’s understandable that someone may go through a short period of not accepting their diagnosis, this can happen with any serious or life-limiting condition, but if they persist in refusing help or simply deny that their symptoms are related to the diagnosis, you may need to seek advice from the healthcare team who they’ve been referred to.
This is because, by refusing to accept their diagnosis, they will not be accessing all of the help and support that is available to someone once they’ve been diagnosed or be able to effectively plan for the future.
Denial can be because someone is scared about the future or feel that if they don’t face up to it things may go away or get better on their own, however, this is sadly not the case with dementia and it will usually be in the person’s best interest to help and support them to eventually accept their diagnosis. As the Alzheimer’s Society tell us, “(denial) is a psychological reaction that enables a person to cope with a difficult situation that may otherwise make them feel afraid, depressed, ashamed or worried.”
Denial should not be confused with ‘lack of insight’, which is where a person with dementia is unable to accept the reality of their diagnosis, rather than actively not accepting it, due to changes in the frontal lobes of the brain that are happening as a consequence of the type of dementia they’re living with.
Whilst patience is always the most effective tool for anyone wanting to communicate with a person living with dementia, here are some other suggestions that may be beneficial when trying to help the person come to terms with their diagnosis.
Take a simple approach to conversation
It’s important to try and discover why the person is refusing to accept their diagnosis, as then it can be addressed, and solutions sought. Using simple language which the person may respond better to, approach the topic carefully, and remember the person may not be comfortable having such an intimate conversation with you.
For instance, if the person is your parent, they may not react positively to you asking them if they’re scared or anxious, as they may not want to portray themselves in such a way to you, always having seen themselves as ‘the strong one’ that you depended on.
They may respond better if the topic is broached by a peer or a sibling; someone who may have seen them at what they’ll consider ‘vulnerable’ times and may not be so against opening up about their feelings to them.
The exception to not using simple language would most likely be if the person diagnosed was actually in the medical profession themselves, as they may then consider that someone speaking to them in layman’s terms is actually patronising. If that’s the case, perhaps another medical professional or even a former colleague may be the best person to broach the subject with them.
Find the facts
You’ll be able to help the person best if you can learn as much as possible about what they may experience as their dementia progresses, so that you can help to answer any questions they may have accurately. There are so many excellent websites and resources online that can help you learn more about dementia and its different types, such as The Alzheimer’s Society, Dementia UK and the NHS to name just a few, and the more you can learn from chatting to the Admiral nurses, palliative care team, or specialist carers, the better equipped you’ll be to reassure your loved one’s worries about their future living with dementia.
Get help from professionals
As well as the multi-agency healthcare team that may already have been put into place to support your loved one or friend, you can seek help from Dementia UK’s Admiral nurse helpline, which is open seven days a week and free to call, the NHS, or the Alzheimer’s Society ‘Dementia Talking Point’ forums, to name just a few. There may be groups already set up in your home town that support people living with dementia and their loved ones, such as the memory café or singing for the brain, and for people caring for their loved ones, Carers Direct Helpline can be extremely useful.
Helping Hands is also a dementia specialist company, and because we’ve been supporting people to remain as independent as possible in their own homes since 1989, we really are the dementia care experts. If you would like to discuss care options for a loved one or even for yourself, you can call us seven days a week.
Don’t force the issue
If the person is adamant that they don’t want to discuss it, then it’s important to respect their wishes and let the matter drop for the time being. Getting angry is understandable when there are heightened emotions involved, yet remaining as calm as possible will be of so much more benefit in the long run and mean the person is more likely to be receptive to the topic when you try to bring it up again another day.
Remaining positive about the future is as important as staying calm, as there’s no point getting the person to open up about their fears if you’re going to agree with every negative prediction they have about how their condition will progress.
While it’s important to be honest, it’s not going to be pleasant for the person to have all of their worst fears made real by the person they’ve confided in. For instance, if the person keeps talking about how they’re going to die soon because a friend of theirs was diagnosed with Alzheimer’s and passed soon after you can reassure them that everyone’s dementia journey is different, even with the same condition, and no-one knows exactly how long they have left to live, which is of course the same for anyone not living with dementia too.
Planning for the future is always difficult, as no-one knows exactly what it will bring, however when someone has been diagnosed with a life-limiting condition, it can be a very good idea to get them talking about what they’d like to do in the short-term and longer. For instance, you might get someone to start talking about the future by reminding them that they always wanted to go on a cruise for instance, and the planning of a holiday could be a pleasant way to take the focus off their condition.
While not everyone wants to talk about their funeral or plan how they will die, it is also reassuring for some people to have everything taken care of in that department, so that their loved ones won’t have to worry about it and they’re reassured that their wishes will be carried out. Whilst the majority of people diagnosed with dementia are over 65, young-onset dementia can affect people at a much younger age, and their fears may be more centred around the care of young children or how a spouse will manage, so ‘stepping into their world’ and seeing things from their point of view will give you excellent insight into where their denial stems from.
Page reviewed by Rebecca Bennett, Regional Clinical Lead on November 30, 2021