Jonathan Hanbury, Founder and Clinical Lead of The Ness Care Group, explains why someone may not accept a dementia diagnosis and how families can respond without causing unnecessary distress.
At The Ness Care Group, we see hundreds of individuals and families affected by memory loss. It is very common for someone not to recognise or accept their dementia diagnosis. In this blog, I want to explore why this happens and what families can do without causing unnecessary upset.
Why does denial in dementia happen?
There are two main reasons why someone may not accept their diagnosis: fear and stigma, or changes in the brain that affect their awareness of what is happening.
The first is that, among the older generation, there remains a great deal of stigma around dementia. When many people who are now in their 70s and 80s were young, dementia was poorly understood. People were often labelled, hidden away in long-stay institutions and given very little meaningful treatment or support.
Even today there are misconceptions. Some people think everyone with dementia will become angry or aggressive, or that a diagnosis means immediately losing independence. This stigma is hard to shake off, so it is understandable that someone may not want the word dementia attached to them.
The second reason is that the illness itself can work against a person’s ability to accept the diagnosis. This is sometimes called lack of insight, or anosognosia. Changes in the brain can make someone genuinely unable to recognise changes in their own memory, behaviour or abilities. Alzheimer’s Society distinguishes this from emotional denial, although the two can look very similar to families.
Memory can play a part too. The person may not remember the memory clinic, the tests, the scan or the doctor explaining the diagnosis. If I cannot remember any of those things, how do I know I have the illness? Maybe I am fine and everyone else has it wrong?
Should families keep correcting someone who is in denial?
Usually, no. Constantly correcting someone or insisting that they remember they have dementia is unlikely to help and may cause upset, fear or anger.
Families naturally want to correct someone they love when events become mixed up or the sequence is wrong. We all feel that desire to put the facts straight. However, with dementia, winning the factual argument is rarely the most helpful goal.
I talk more about this in our blog Compassionate Communication and Dementia
Whether every detail is correct is often less important than how the person is feeling. Do they feel listened to and respected? Are they enjoying the conversation?
Part of what looks like denial may be an inability to grasp or retain the diagnosis. Repeatedly reminding someone may simply make them experience the fear of hearing it again. NHS guidance also advises families to listen carefully and pay attention to tone, body language and the person’s emotional response, rather than focusing only on words and facts.
What can families say instead?
Families can use language that feels familiar and comfortable, rather than insisting on the word dementia.
Almost everyone at some point will say, “My memory is awful.” Someone with dementia may be far happier and more willing to admit that their memory is not very good.
At The Ness, we often hear:
“Sorry, my memory isn’t great.”
We might respond:
“I know, mine is awful at times too. Let’s work it out together.”
This helps the person feel less judged and less alone.
At The Ness, we do not keep mentioning the “D word” if the person finds it distressing or does not believe they have dementia. We follow their lead. If they bring it up themselves, I will often ask how it makes them feel.
It can be a weight off someone’s shoulders to admit they feel frightened, frustrated, upset or angry.
What if denial stops someone accepting help?
Denial or lack of insight can become a real problem when it stops someone accepting support that could help them remain safe, healthy and connected.
This might include refusing medication, refusing support at home, refusing to attend a specialist group or becoming increasingly isolated.
With heart disease, you might say:
“You have heart disease, so you should see a physiotherapist and nutritionist to reduce your risks.”
With dementia, you cannot simply say:
“You have dementia, so you need to attend The Ness twice a week to support your memory and brain function.”
If the person does not believe they have dementia, that explanation will not make sense.
How can families encourage someone to accept support?
Families can use the person’s biography, interests and habits to describe support in language that feels familiar and appealing.
Instead of saying someone is attending a dementia day service, you might describe it as a lunch group, church group, activity group or new café, depending on what would resonate with them.
Rather than saying a carer is coming to make sure they have eaten and taken their medication, it may feel more acceptable to say that someone they know is popping in for company and to give them a hand with lunch.
Rather than telling your husband that he needs a bath, you might ask whether he could help you in the bathroom because you feel unsteady.
Each time, you are gently changing the language so the person feels more in control and more willing to accept the activity or support.
Is it wrong to use a partial truth?
It’s not always wrong to use the partial truth, but it needs care. These partial truths may feel uncomfortable and will not be right for every person or situation.
Where possible, we should be honest, use simple explanations and involve the person in decisions. However, repeatedly stating a painful fact that they cannot understand or remember may cause unnecessary distress.
The important question is why you are changing the language. Is it for convenience, or is it to protect their dignity, reduce distress and help them accept something that genuinely benefits them?
The aim is not to prove that you are right. It is to find the least distressing and least deceptive way to help the person live a healthy and happy life.
Alzheimer’s Society describes a spectrum from telling the whole truth, through distraction and going along with the person’s understanding, to lying. There is no single response that will suit every situation, but reducing distress should be central to the decision.
If someone is refusing essential medication, speak to their GP, pharmacist or another relevant health professional. Do not hide medicine in food or drink without proper advice. Covert medication requires professional involvement and a formal best-interests process where the person lacks capacity to make that particular decision.
How does The Ness support someone who does not accept their diagnosis?
At The Ness, we accept the individual as they are in that moment and work in a way that offers dignity, agency and a sense of control.
We recognise that many people who visit our dementia support services do not believe they have dementia or are uncomfortable with the label. We take time to understand their interests, background and routines, then explain the visit in language that feels comfortable for them.
We do not expect someone to accept the “D word” before they can enjoy company, conversation, activity and specialist support.
Our groups are social and enjoyable, but there is a purpose behind what we do. We use structured cognitive activity, including Cognitive Stimulation Therapy, to support memory, communication, confidence and social connection. The National Institute for Health and Care Excellence recommends group Cognitive Stimulation Therapy for people living with mild to moderate dementia.
Denial is a normal response to an incredibly challenging diagnosis. Lack of insight can also be part of the condition itself. We should not force someone to accept a label they cannot understand or retain.
The aim is to meet the person where they are, reduce distress and help them live as safely, confidently and meaningfully as possible.
If someone close to you is refusing support or you are unsure how to introduce the idea of attending a Ness Memory Hub, find out more about our Ness Memory Hubs, call 01626 774 799 or email info@nesscaregroup.co.uk.