This article is aimed at family carers who care for someone who has received or is in the process of receiving a diagnosis of dementia and is struggling to acknowledge it.
Coming to terms with the fact that you have dementia can be tough, and the process is different for everyone. Sometimes that process involves denial of experiencing dementia symptoms, or of having dementia at all, even after diagnosis. As a carer, it can be hard to know how to move forward if the person you care for won’t accept that they have dementia, so here are some things you can do to help them manage their condition.
Denial versus Loss of Insight (Anosognosia)
People who have certain types of dementia may lose their capability for recognising the condition in themselves, due to the changes taking place in their brain. This is different from denial.
- Denial: When someone consciously or subconsciously refuses to accept the fact that they have dementia, because such acceptance would lead to some degree of mental anguish. It’s often a coping mechanism in and of itself. Denial can be overcome.
- Loss of Insight: When changes in the frontal lobes of someone’s brain lead to their being unable to recognise that they are experiencing issues or symptoms of dementia. Loss of insight isn’t something that can be changed. Also known as ‘lack of insight’.
Neither are deliberate. In this article, we will be focusing on denial rather than loss of insight.
Why Does Denial Happen?
The most important thing to remember is that nobody remains in denial on purpose. Though your loved one may display some challenging behaviours, it is very possible that they genuinely aren’t aware that the symptoms they are experiencing are giving rise to problems. In cases where they do have awareness of this, they could be feeling scared and quite overwhelmed. It can be frightening to accept that your brain is changing in a way that you can’t control, and even more challenging to acknowledge the consequences of that.
Denial is a coping mechanism, and though it can be very frustrating to deal with as a carer, it’s not necessarily unproductive. Denial can give people the chance to process things subconsciously; it acts as a shield until they’re ready to face their new reality. There are times when this can lead to a healthier, more productive, and less painful acceptance in the end.
Pre-Diagnosis Denial: How to Deal With Denial of Dementia Symptoms
1. Remember that denial is not deliberate
It might feel like the person you’re worried about is intentionally ignoring the issues they’re experiencing, but though denial can be worked through, it isn’t something that can be controlled. When you’re speaking to them, it can be helpful to remember this in order to lessen any irritation you might feel with them.
2. Stay calm and aim to be compassionate
It can be incredibly frustrating when someone refuses to acknowledge the reality that is so clear to you, but if you can avoid getting annoyed then your interactions with the person you’re concerned for will be so much more beneficial for the both of you.
3. Have compassion for yourself too
Even when trying your very hardest, it is likely that there will be times when you get upset or annoyed in interactions with your loved one if they won’t seek help for the problems they’re experiencing. Try not to blame yourself too much; caring is a stressful job and it doesn’t make you a bad person if you occasionally end up expressing your frustration (as long as that expression doesn’t include unacceptable behaviours, for instance physical violence). Take a deep breath and keep trying your best going forward.
4. Don’t be forceful in your conversations
If a conversation about seeking help becomes confrontational, let it go. Backing your loved one into a corner is more likely to cause them to lash out than it is to accept your words. In maintaining an environment of consideration and respect, you show them that you are receptive to their wishes and that conversations with you are a safe space. This will make them more likely to engage with you on the topic when you bring it up the next time.
5. Use language that’s within their comfort zone
Though the person you care for may shut down conversations when they hear words like ‘Alzheimer’s’ or ‘dementia’, they may be more open to discussion if you talk about specific issues they’re experiencing, like forgetting where they’ve put things or having trouble with certain tasks. If you can engage them on this level then they may be more amenable to accepting help for those particular problems.
Post-Diagnosis Denial: How to Deal With Denial of a Dementia Diagnosis
1. Give your person time to grieve
Receiving a dementia diagnosis can be a shock. Your loved one may need time to process it, and to grieve the loss of a different future they might have imagined for themself. If they don’t want to talk about the diagnosis immediately after receiving it, don’t make them; they may just need time.
2. Encourage them to speak to professionals
Speak to your person’s GP and ask if they can help you have a conversation with your loved one; their position of authority might mean the person you’re caring for is more likely to listen. If they’re open to the idea, speaking to a counsellor or therapist could also be instrumental in helping them to overcome their denial of their diagnosis.
3. Look for local support groups
There are groups for all kinds of interests, from café meet-ups to arts-and-crafts to sports. Groups like this provide a judgement-free space and the chance to talk to others going through the same experience, which could help the person you care for overcome their fear of admitting to their diagnosis. They’re also fun and allow for what is often much-needed social interaction.
You can contact local carer organisations for information about support groups in your area. The Alzheimer’s Society website also has a fantastic database of support groups for people with dementia.
4. Don’t speak about your loved one’s diagnosis to others in front of them
It’s healthy for you to speak through your concerns and stressors with others, but if the person you’re caring for is struggling to accept their diagnosis then don’t bring it up to others in front of them. It could embarrass, anger, or upset them, and may well make them feel powerless, like they have no say over their own health and who is privy to information about it.
5. Try to pinpoint the reason behind their denial
Of course nobody wants to be told that they have dementia, but what exactly does the diagnosis mean for your particular person? Are they afraid of a loss of freedom? Of being unable to participate in an activity that they once loved? Of being placed in a care facility? If possible, have gentle conversations to tease out precisely what’s stopping them from acknowledging their diagnosis. If it’s possible to reassure them that what they fear can be mitigated — for example, someone who doesn’t want to leave their home can be told some of the measures that can be put in place to keep them living there for longer — they may feel more free to acknowledge the fact of their dementia.
6. Lead with flexibility
Ultimately, it’s important to engage with your person to find what works for them, otherwise they’ll be resistant. Be flexible. Change your approach to dealing with them if needed; be willing to listen to what they want and what they think about things. Sometimes safety will need to come first — for instance, they may want to continue driving even after their doctor has advised that they shouldn’t — but if you can, incorporate their wishes into the way you care for them and allow them to live life on their terms as much as possible.
7. Encourage them to continue doing the things they love
Your loved one still has passions and activities they enjoy doing. Encourage them to take part in them — it’s important for them to feel that they have things to live for and that they have intrinsic value as a person. Taking part in things that make them happy can reduce stress, anxiety, and loneliness, while improving engagement and a feeling of involvement.
8. Support them to spend time in nature
Spending time in nature is important for all of us, but can be especially beneficial to people living with dementia. The natural world is naturally stimulating, and when we keep our brain stimulated it strengthens our neural pathways. Research shows that meaningful outdoor activity and connection with the natural environment can have a positive effect and can even slow down the progression of dementia symptoms.
9. Continue to look after yourself
Be honest with friends and family about the changes that are taking place and how you’re coping in your caring role. Educate them on dementia, or encourage them to educate themselves. Talking will help you relieve stress and think your way through any challenges you’re experiencing. Others are very often willing to pitch in if you give them specific tasks that you need help with, like visiting the person you care for once a week, or helping to research whether there’s any support offered by your local council.
It can be hard to think about yourself as a carer, but there are steps you can take to do so; take a look at our article on How to Look After Yourself While Caring for Someone Else.
10. Think about your big-picture goal
What is it that you want for the person you care for? It’s likely that what you want is for them to remain as healthy and happy as possible for as long as possible. When you come up against daily frustrations in caring for them, try to take a step back and think about what your ultimate goal for them is. It may help you let go of some of the smaller things, and gain perspective on how to approach more serious issues.
11. Attend Dementia Adventure’s free Understanding Dementia Better training
We offer free, online training for friends and family of people living with dementia through our Understanding Dementia Better sessions. Run by our inhouse experts, they’re full of practical hints and tips to help carers in their support role. They’re also a chance for you to hear from other people who are in a similar situation to you.
Is It Necessary for Someone to Accept That They Have Dementia?
It is quite common for people living with dementia to deny that they have the condition.
As long as the person you care for is open to receiving the support they need, you don’t need to insist that they recognise their diagnosis; you can instead have some gentle conversations with them about putting the help they need into place.
Though denial of diagnosis is not an issue in and of itself, problems can arise if someone with dementia refuses to accept help, insists on continuing to do potentially dangerous activities like driving, or begins to forget things like their medication schedule. If it becomes necessary to try and encourage recognition of the fact that they live with dementia, it’s important that this is done slowly and calmly. Understand that it may not happen immediately, and may take quite some time. It’s possible that your person will never recognise themselves as having dementia, but will instead accept a phrase like ‘memory difficulties’. This is perfectly okay as long as it leads to their receiving the correct support.
The Benefits of Acceptance
There are benefits to a person living with dementia accepting that they have the condition if they can. For instance:
- They can begin to access and accept any support they need.
- It will help them make decisions about what they can and can no longer do for themselves.
- They are less likely to put themselves and others at risk by, for example, incorrectly taking medication, driving dangerously, or leaving appliances running.
- They can start to put in place adjustments around the house to help them live independently for longer.
- They can begin possible treatments as soon as possible.
- They can plan for the future and have a say in how they want to be cared for in the later stages of their life.
- It can reduce stress and anxiety about their wellbeing in the person caring for them.
When is Acceptance Not Necessary?
In some cases, insisting that someone acknowledge that they have dementia can create more distress than it will help the situation. If your loved one’s behaviour isn’t currently endangering them or others, and any issues created by the condition can be easily worked around, then consider whether acknowledgement is really needed. It’s possible that the person you care for will need to recognise their dementia further down the line, but it may be better to wait until this becomes a necessity.
If someone frequently forgets about their diagnosis, reminding them and causing them upset won’t always be productive when they won’t be able to retain that information.
No One-Size-Fits-All Solution
Because every person living with dementia is different and processes being told that they have dementia differently, there really is no one-size-fits-all solution for dealing with dementia and denial. However, we hope that you found the above strategies helpful.
If you want further information on what you can do to support the person you care for to accept the help they need, why not book onto one of our Understanding Dementia Better sessions? There is time provided for questions during each session, and our expert trainers will be happy to answer your queries to the best of their ability.