Nobody wants to be told they have dementia but if the person you’re caring for refuses to accept their diagnosis, don’t despair. There’s plenty you can do to help them come to terms with it and get the help they – and you – might need.

The tests have been done and the diagnosis is official, but while you might be feeling sad and worried, it’s extremely common for a loved one to simply deny their diagnosis and refuse to discuss it – even if they’ve spent months or years experiencing symptoms. For families and carers this denial can be a frustrating obstacle, especially if you’re trying to sort out practical ways to keep them safe. But it’s also very understandable…

Put yourself in their shoes

Imagine being told you have an essentially chronic and incurable condition. Would you simply nod your head and agree, or would you question it, particularly if you’re feeling quite well and have been telling yourself for years that your ‘forgetfulness’ is just old age. So first ask yourself… can you really blame them?

Five reasons for dementia denial

1 They haven’t yet noticed their symptoms
It may be the case that the person with dementia doesn’t even realise there’s a problem because it’s not affecting their life too much. This is often the case if their spouse or partner is covering for them and helping them out with everyday activities that they might normally struggle with if they were on their own.

2 It’s a coping mechanism
Sometimes denial is simply a way of masking the fear, uncertainty, grief and loss they may be experiencing at the prospect of their diagnosis and the future that lies ahead. This denial could be illustrated not only through them saying there’s nothing wrong, but also general anger, moodiness and depression.

3 They may not remember the diagnosis meeting
Even if they do accept at the time of the diagnosis that there is a problem, there’s also the chance that they may have forgotten the meeting and the point at which the doctor gave a diagnosis within a few weeks.

4 They think it’s just part of getting older
One of the biggest myths surrounding dementia is that it’s a normal part of getting older, and that ‘everyone loses their memory’ in the end. This is not the case. Dementia is an actual brain disease and the decline in cognitive faculties is very different to the occasional absent-mindedness that can happen to many people (and not just older people).

5 The stigma of dementia
As well as being considered ‘just a normal part of ageing’, having dementia simply wasn’t spoken about until relatively recently. The very idea of being ‘demented’ had connotations with the mental asylum and so if someone had noticeable symptoms, it was kept hushed up. The idea of being ‘put away in the madhouse’ or left alone in a nursing home means people might not want to draw attention to their illness and so deny they have a problem.

How can you help?

- Accept that denial is often part of the dementia journey
While they may point blank refuse to accept their dementia at first, as their condition progresses they will probably come to accept their symptoms as part of their lives. They may never truly accept their diagnosis, but they will probably reach a stage where they stop saying there’s nothing wrong with them.

- Explain it in more gentle terms
Many people don’t like the ‘D’ word – dementia. It scares them so much that they refuse to believe it. However, if you explain that their memory problems are because their brain isn’t working as well as it used to, they may be more willing to accept it. Some carers admit that so long as their loved one knows that their memory ‘isn’t what it used to be’, that’s a step along the road to a certain degree of acceptance.

- Try a few therapeutic lies
This is the practice of allowing yourself a few little white lies in order to keep a loved one with dementia safe or happy. If they’re refusing to accept their dementia diagnosis, and as such, are refusing help and support from other people (particularly professionals), then you could introduce them as ‘friends’ who are there to help out. Many older people are fiercely independent and proud, and are not used to sharing their private business with strangers. If they think the carer is there as a ‘friend’ of a family member, they may be more willing to accept them. You could also angle it that it’s for your peace of mind or that they’re there to keep them company, rather than to actually ‘care’ for them.

- Appreciate that ignorance can be bliss
If they can’t remember that they have memory problems, and that’s why they’re denying their dementia, then it probably means they won’t be as stressed about it. If they’re very aware of their memory issues, then they may end up feeling worried about the future.

- Take measures to keep them safe
Sometimes no matter how much they deny there’s a problem, you’ll need to work around them to ensure they stay safe. This could be anything from getting neighbours to look in on them regularly, to installing aids around the house to prevent accidents. There is a range of items that can keep someone safe at home, which won’t necessarily impact on their daily life and make them feel like they’re being ‘molly-cuddled’.

- Find ways to work around it  
If they refuse to accept that they have dementia, sometimes the easiest, and least stressful thing you can do is to simply be there in the moment with them, and not try to force it. Your main priority is keeping them safe and happy. Accepting that your loved one refuses to believe they have dementia, but finding ways to work around it is your main priority now.

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When other family members or carers won’t accept a dementia diagnosis

Sometimes, it isn’t only the person with dementia who refuses to accept it… other friends and family may deny it too, particularly in the early stages when the signs of dementia are less frequent or obvious.

Four reasons they’re denying it

1 They hope it might go away
Dementia is an incurable condition, but that doesn’t stop people secretly hoping that the ‘good days’ are actually a sign that the person is getting better. If the person with dementia is quite self-sufficient and able, family members may brush off the other little signs and symptoms – the repeated conversations, lost journeys – as a one-off.

2 They rely on that person
If a family member, such as the husband or wife of the person, is refusing to accept there’s a problem, it can be because they have always looked to that person as a source of strength, information or support. Accepting diagnosis would mean they might have to take over things – for example running the house or paying bills – and that scares them.

3 They don’t see the person regularly
Some family members may not spend as much time with the person with dementia as the main carer, so don’t see all the examples and instances of dementia. For example, ‘I spoke to Auntie Sue last week and she seemed fine’ when in fact, she hung up the phone and didn’t even understand who she was speaking to.

4 Fear about the future
Not surprisingly, one of the major reasons may be that they’re worried about what lies ahead for the loved one and for them as a carer. There are a host of challenges that can occur for someone with dementia, but learning about them can help them prepare for as a carer.

How you can help

- Have a family meeting
This can help to provide reassurance and give you a chance to explain the situation to close family or friends. You may want to bring along literature, leaflets or website pages for people to take away and read or look up (as often fear and denial are a product of ignorance). The person with dementia may or may not want to be present during the meeting, depending on whether they also accept the diagnosis.

- Explain that it’s ok to be worried
A dementia diagnosis is obviously going to leave many people feeling concerned about the future, and explaining that it’s normal to feel worried is fine. However, even if they still refuse to accept a diagnosis, you should let them know that you’re there to help and support as much as you can.

- Explain the implications of denial
While it’s important not to scaremonger anyone, it’s also vital that everyone understands that failing to accept a dementia diagnosis could ultimately be detrimental for both the health of the person with dementia and even their own health if they’re the main caregiver. Read below for more information on this.

- Provide support where you can
Whether it’s helping them to set up a Lasting Power of Attorney (even if they don’t accept a diagnosis, it’s a useful document to set up for anyone) or researching what benefits or care support options are available, let them know you are there to help and support.

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What’s the harm? The risks of dementia denial

Persistently refusing to accept that anything is wrong can, sadly, have some serious implications, such as;

- Accident and illness
If the person with dementia tends to walk off and get lost, or is unsteady on their feet, refusing to accept that this is a result of dementia could ultimately put them at greater risk of having an accident because of it. They may be more likely to double dose any medication they’ve taken because they can’t remember whether they’ve already taken it.

- Family conflict
If some family or friends refuse to accept a dementia diagnosis, while others don’t, this could lead to conflict between them, as you try to work out what is the best for the person.

- Lack of medical help
While there may be no cure for dementia yet, there are drugs that can help to slow down its progress. Refusing to accept that they have dementia could mean that they don’t get access to drugs that could really help improve their early symptoms.

- Financial exploitation
As dementia progresses, it may be easier for unscrupulous people to take advantage of memory problems or uncertainty to carry out financial fraud, or get the person with dementia to sign up to schemes or agree to things that they really shouldn’t. Setting up legal documents that can help to protect them – such as Lasting Power of Attorney – will help to reduce the likelihood of this happening. However, by refusing to accept a diagnosis, it could mean that by the time these documents are needed, it could be too late to set them up as the person with dementia will no longer have mental capacity.

- Stress for the carer
Denying dementia can impact the main carer. Whether it’s having to bathe, lift, placate or look for them, the stress of caring for a loved one with dementia can be enormous. That’s why denying that there is an issue in the first place can be worse, as they’ll often not ask for or get the support that would make life that bit easier.

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