Being diagnosed with dementia can be a shock and often triggers difficult emotions. Understanding why you are having these feelings – and how to manage them – can help you come to terms with the diagnosis.
When someone is diagnosed with dementia, it can have a big impact on the emotions of the person themself, their family and friends.
Some people may experience:
- shock – particularly if the diagnosis was unexpected
- relief that you now know what is causing the person’s symptoms
- disbelief – especially in the case of young onset dementia (where symptoms develop before the age of 65)
- anxiety, low mood and/or depression
- feelings of being overwhelmed
- feelings of helplessness/hopelessness
- worry about the future
How someone responds to a dementia diagnosis – whether they have the diagnosis themselves or someone close to them has been diagnosed – will vary according to their own personality, and other factors such as:
- the age of the person with the diagnosis
- their relationships with family and friends and how they communicate
- the impact on their lifestyle, eg employment, hobbies, driving, looking after children, socialising
- their finances
- any spiritual and cultural beliefs
- how well they can adapt their life to cope with the changes that dementia can bring
- their usual or previous coping strategies for managing problems and distress
- stigma and discrimination around the diagnosis
Often, the changes that dementia causes in someone’s behaviour and/or personality will influence how they respond emotionally to their diagnosis.
For example, changes in the brain may affect how they process information – the person may not fully understand their diagnosis, or they may forget that they have been diagnosed and become upset when they are reminded of it.
And changes in the person’s personality may affect their emotions – for example, their feelings may be more extreme, such as intense anger or despair.
Other people’s reactions to the diagnosis may also affect the person’s emotional response.
Comments like, “You’re too young to have dementia,” “There’s nothing wrong with your memory,” or, “You seem fine to me” can be upsetting
Sometimes, family and friends have difficulty accepting the dementia diagnosis and the changes it can cause. This can be especially true if the person’s symptoms do not match up with their perception of how dementia presents, or if the person is younger.
They may be distressed about how the person is changing, and feel grief for the life that they were expecting to have with the person.
They may try to conceal their own emotions for fear of upsetting the person with dementia.
There may be tension between them and the person with the diagnosis and/or other family members about important decisions or coping strategies to use – and this can cause further distress.
A diagnosis of young onset dementia can be especially challenging and cause additional worries, such as whether the person will be able to continue to work, how it will affect the family’s finances, or the impact on their children or teenagers.
Explaining a diagnosis of dementia to children or teenagers can be very difficult, especially if their own parent – rather than a grandparent or other older relative – has been diagnosed.
They may experience a range of emotions, including:
- fear and anxiety about the future
- irritation or boredom, eg if the person repeats stories and questions
- embarrassment about being seen with the person, eg if they behave in unusual ways
- confusion about role reversal
- grief or loss
- rejection, eg if a parent becomes less involved in their life
Your GP may be able to suggest specialist support services for young carers, or you could look into local or online support groups.
There are many good books about dementia for children of all ages, and our resources for parents and children may also help.
Adjusting to a dementia diagnosis can be difficult and may take time, but these tips may help the person to come to terms with it and live well with dementia.
- Talk about the future – these conversations can be hard, but can reduce miscommunication and misunderstandings and help you move forward with more confidence
- Support the person to maintain their independence with everyday tasks, work, family life, socialising, hobbies, travel etc, with adaptations if necessary
- Focus on their strengths, rather than what they can no longer do
- Maintain social connections – withdrawing socially can lead to feelings of loneliness, hopelessness, low mood and depression
- Look into opportunities for new activities and interests to keep the person mentally stimulated, avoid isolation and maintain connections
- Take things one step at a time – rather than worrying about the future, set small daily goals, eg, “Today, we’ll walk to the shop”
- Try to avoid negative comments or correcting the person if they get something wrong
- If the person has young onset dementia or a rare form of dementia, find out if there are specific charities or support groups for their condition
Bear in mind that dementia itself can cause changes in a person’s personality, behaviour and ability to cope with challenging situations. This can be frustrating for them and those around them.
If tensions arise or the person is distressed, think to yourself:
- Why are they responding this way?
- What might they be feeling?
- What can I do to help them with their feelings?
While it is important to support the person with dementia with their feelings, it is equally important to acknowledge and respond to your own emotions.
- Join a social or peer support group, either in person or online, to meet other people in a similar situation and share advice and support
- Find out about companionship, befriending or respite schemes in your area to give yourself a break from caring
- Educate yourself about dementia so you understand the changes in the person with the diagnosis. We have lots of information resources that may help
- Do not be afraid to talk to family or friends about your thoughts and feelings – bottling things up can make it harder to cope
- Having a family discussion about future plans, including applying for lasting power of attorney and making an advance care plan, can give you peace of mind
- Try to consider issues as they arise and look for solutions, rather than worrying about problems that might come up in the future
- Make time for activities that you and the person can enjoy together, eg holidays, days out, listening to favourite music, taking care of a pet, gardening, craft or going for walks
- Work together to create a life story – a record of the person’s past and present life, and their wishes for the future. This can encourage reminiscence and help you connect
If you and/or the person with dementia are experiencing ongoing feelings of depression or anxiety, it is important not to struggle alone. Please speak to your GP about support they can offer.
Talking therapies can be very helpful, and you can refer yourself for NHS therapies without seeing your doctor, although waiting lists can be long.
You can also speak to our dementia specialist Admiral Nurses for advice and support with the emotional impact of the diagnosis or any other aspect of dementia. Please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm), email email@example.com or you can book a phone or video call appointment with an Admiral Nurse.
Dementia UK resources
- Changing roles and relationships
- Coping with feelings of guilt
- Coping with distress
- Young onset dementia support services
- Dealing with stigma
- Grief, bereavement and loss
- Looking after yourself as a carer
- Managing anxiety and depression in dementia
- Tips for better communication