Ricky’s talks about how his Gran’s dementia diagnosis impacts his whole family and why he is supporting the ‘We live with dementia’ campaign.
If someone has signs of dementia or has recently been diagnosed, they and their family and friends may have difficulty processing this. This may lead to denial and a lack of insight.
Denial is the refusal to accept the reality of a situation. It is a defence mechanism that helps people manage their fear and anxiety around difficult situations.
Denial is very common in people who are showing signs of dementia, and their family and friends. They may be unwilling to acknowledge the possibility of dementia and try to find another explanation, such as normal ageing, tiredness, health problems or stress.
Denial is also common in people who have recently been diagnosed with dementia and their families. For example, they may believe that they have been misdiagnosed, or in the case of younger people, that they are too young to have dementia.
Reasons for denial around dementia include:
- worries over losing independence
- fear of what will happen in the future
- the lack of a cure
- lack of understanding of dementia
- experience of seeing other people with dementia
- stigma and discrimination
- the media’s portrayal of dementia
Denial can be a particular issue if the person is younger, as many people wrongly assume that dementia is a condition of old age; or if they have a rarer form of dementia, where memory loss may not be one of the early symptoms.
In some forms of dementia, such as frontotemporal dementia, the part of the brain that controls insight can be affected. This may mean the person lacks awareness of their own dementia symptoms, such as changes in their behaviour.
Lack of insight generally gets worse over time and can cause frustration and distress for family, friends and colleagues – for example, if the person is reluctant to seek a diagnosis or accept support.
If a person with signs of dementia and their family are in denial about what is happening, it can lead to:
- a delay in seeing the GP to rule out other conditions
- a delay in accessing support, including medication to slow the progression of certain types of dementia, help with daily living, and financial benefits
- mental ill health due to worrying about what is happening
- relationship changes, eg if family members are reluctant to mention their worries to the person in case they upset them
- avoidance of social situations
- the person continuing to drive when it is unsafe for them to do so
- problems at work – such as making mistakes, which may be put down to carelessness
- putting off planning for the future – for example, by making a lasting power of attorney and a Will – which may mean that by the time these matters are addressed, the person has lost the mental capacity to share their views
- verbally or physically aggressive behaviour – for example if the person denies needing support from family members and reacts negatively when it is offered
Often, people who are in denial will eventually come to accept their dementia symptoms or diagnosis, so give them time to talk about their worries, listen to what they are saying and respond accordingly.
If the person is reluctant to see their GP, you could explain that their symptoms may be due to another condition that could be treated; and that if it is dementia, putting support in place promptly could help them maintain their independence and quality of life.
You could also contact their GP explaining your concerns. They will not be able to discuss the person’s medical care with you but may call them in for a health check.
You could ask another family member or friend to speak to the person – they may be more willing to listen to someone who is slightly detached from the situation.
Think about solutions to the issues that the person is concerned about – if they can see ways around these problems, they may be able to work through their denial.
For example, if they are worried that they will have to stop driving, you can explain that many people with dementia can continue to drive for some time.
Or if they are concerned about having to give up work, you could look into adaptations that their employer could put in place so they can keep working.
If family members are in denial about the person’s dementia symptoms or diagnosis, make time to explain what you are concerned about. You could keep a diary of symptoms to show them, or give them our information on signs of dementia and the different types.
If a child or teenager is struggling to accept a dementia diagnosis in a family member – particularly a parent – ensure you explain the changes in age-appropriate language and give them time to talk. There are lots of books to help them understand dementia.
If you are having difficulty accepting a dementia diagnosis in a loved one, support is available. You can speak to your GP, join carers’ groups, or contact our dementia specialist Admiral Nurses – please see Sources of support for details.
It can be very difficult for families to cope with a lack of insight in the person with dementia, but these tips may help:
- Avoid confrontation – remember that the person’s lack of insight is not intentional
- If the person is reluctant to see the GP for a dementia assessment, encourage them to get a general health check
- Ask how they are feeling and give them time to respond – this may help them identify some of the issues they are facing
- Provide non-critical feedback, information and support when an issue occurs
- Focus on the person’s strengths and what they can still do, eg taking part in activities they enjoy
- Be aware that decision-making and judgement may also be affected, leading to impulsive behaviour
- Seek professional advice about managing lack of insight – your GP may be able to recommend support groups or dementia training, or you can contact our Admiral Nurses (see Sources of support)
To speak to a dementia specialist Admiral Nurse about denial, lack of insight or any other aspect of dementia, please call our Helpline on 0800 888 6678 (Monday to Friday 9am-9pm, Saturday and Sunday 9am-5pm) or email email@example.com
To book a phone or video call with an Admiral Nurse, please visit dementiauk.org/book
Dementia UK resources
- Books about dementia for children
- Different symptoms of young onset dementia
- Driving and dementia
- Employment and young onset dementia
- Frontotemporal dementia
- Getting a diagnosis of dementia
- Lasting power of attorney
- Stigma and discrimination
- Supporting children and adolescents when a parent has young onset dementia
- Symptoms of dementia
- Types of dementia
- What is young onset dementia?
- Carers UK
- Dementia Carers Count: free support courses for family carers
- Dementia Engagement and Empowerment Project (DEEP): a network of groups of people living with dementia
- Rare Dementia Support
Book an appointment with an Admiral Nurse
Our virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call, at a time that suits you.