How to deal with denial in dementia
The concept of denial is very common within dementia. At The Ness, we see hundreds of families and we will rarely assess someone who has insight into their diagnosis and accepts the diagnosis of dementia. In this blog, we are going to explore why this occurs and what actions families should take to support the person living with memory loss.
Why does denial in dementia occur?
There are two primary reasons why individuals don’t accept their diagnosis.
The first is that amongst the older generation, there remains a great deal of stigma around the diagnosis. When those who are now in their 70s and 80s were young, individuals diagnosed with dementia were still being locked up in government-run Elderly Mental Institutions (EMIs); they were labelled mad and given very little treatment. Even today there are many misconceptions around the disease with those in the community misunderstanding some of the symptoms (people think everyone with dementia will become angry or aggressive). This social stigma is hard to shake off and therefore people prefer not to have the label ‘dementia’ attached to them.
The second reason is that the illness itself works against a person’s ability to accept their diagnosis. For a start, the individual will not be able to remember the visit to the memory clinic or the doctor informing them of their dementia. If I can’t remember the tests, the scan or the formal diagnosis then how do I know I have the illness? Maybe I am fine and it is everyone else who has it wrong? We construct our own sense of self, we are our own memories, our perception and our brain. Therefore if someone tells me that I have dementia I don’t believe them, I am far more willing to believe my own memories and my own perception.
How do family & informal carers help someone who is in denial?
I talk in another blog about communication and families’ unnecessary need to correct someone when they get events mixed up or the sequence of events incorrect. We all feel the desire to correct or inform someone we love if they are making a mistake or misremembering. However, you should try to avoid this for those living with dementia.
Whether a fact is correct or not is no longer important. How that person is feeling and whether they are finding joy in the conversation/communication is the sole goal. As I explained above, part of denial is an inability to grasp the diagnosis and so constantly reminding someone or insisting they remember they have dementia is not going to help. It will cause upset and may end in anger.
Almost everyone at some point in their life will say, ‘Oh my memory is awful’ or something along those lines, and so those with dementia are far happier and more likely to admit to having a bad memory. At The Ness, we often hear, ‘…sorry my memory isn’t great,’ and we will often respond by saying ‘…oh, I know my memory is awful at times,’ making them feel less judged and it more acceptable to have no memory.
At The Ness, we never mention the D word unless the person living with dementia mentions it first, but if they do bring it up I often jump on the opportunity to understand more. If someone admits to having dementia, I will often respond by asking how that makes them feel. We all find it easier to describe feelings and it is often a weight off their shoulders to admit they are scared, frustrated, upset or angry by the diagnosis.
So no need to remind someone they have dementia. You can just refer to a bad memory.
When Denial can cause problems and what to do?
At The Ness, we recognise that at times denying you have an illness can create challenges for families (and for us). This includes refusing to take medication, refusing to accept carers into the house, refusing to attend a specialist space like our dementia care centre, and taking actions that negatively impact an individual’s mental health like isolating. Unlike with heart disease in which you may say “You have heart disease you should see a physio and nutritionist twice a week to reduce your risk,” you can’t say “you have dementia you need to attend The Ness twice a week to maintain your brain and delay the deterioration of dementia.” They don’t believe you and can’t understand the recommended dementia treatment.
When denial becomes a challenge, family and informal carers need to use an individual’s biography and habits to encourage behaviours that will help. This may mean referring to activities or actions in a language that resonates with an individual. Instead of attending a daycare service, you are going to a ladies’ lunch club or a church group or a new café. Rather than a carer coming to ensure you have eaten and taken your medication, there is a local friend of the family visiting as she is bored and would welcome the company. Rather than asking your husband to take a bath, you ask if they can help you in the bathroom as you feel unsteady. Each time gently changing the language to help the individual living with dementia to feel in control and keen to try/accept the action/activity.
These semi-truths may feel uncomfortable to some and/or not appropriate to others and they do not always work. However, the important thing is to recognise that someone’s ability to understand the logic, a clear explanation or to remember diagnosis/facts is no longer possible, and what is true or not true is equally no longer important. What is crucial is to enable the individual to live a healthy & happy life.
What we do at The Ness
At The Ness, we accept the individual as they are in that moment and in a way that offers them dignity and agency. We do not mention the D word and recognise that most people who visit our dementia support services don’t want to, or don’t believe, they have dementia. We do know that maintaining social connections, reducing isolation and stimulating our brains will delay dementia and The Ness will work with families in a way that works for them to help each person.
Denial is a normal reaction to an incredibly challenging illness. We should accept denial and take joy in what we have.
If you are looking for dementia care near you, then get in touch with our team for a complimentary consultation and to learn more about our service and how we can help. Call our team on 01626 774 799, or email [email protected].