The emotional impact of a dementia 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:

• low mood
• feelings of despair
• withdrawing from other people
• feelings of worry, agitation and panic
• a need for reassurance
• a sense of embarrassment or shame

For others, there’s a degree of relief, because they now understand what’s happening.

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
• whether the person is in employment
• their finances
• any spiritual beliefs
• how well they can adapt their life to cope with the changes that dementia can bring
• how they managed problems and distress in the past

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 – particularly if they have been diagnosed with young onset dementia (dementia before the age of 65) or a rarer dementia that has less widely recognised symptoms.

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.

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.

Adjusting to the dementia diagnosis can be difficult, but the more support, purpose and pleasure the person finds in life, the less likely it is that they will be overwhelmed by negative emotions.

The person could try to:

• maintain social connections with friends and family – withdrawing from others can lead to feelings of isolation and hopelessness
• talk to people they trust about the diagnosis – bottling up feelings often makes things feel worse
• take things one day at a time. Rather than worrying excessively about the future, they could set small daily goals, such as, “Today I’ll phone my friend” or “Today we’ll walk to the shop”
• keep up with activities and pastimes they enjoyed before their diagnosis to maintain a sense of normality
• investigate new opportunities and interests – trying a new activity or joining a different social group could help to keep the person mentally stimulated and give a sense of enjoyment

These tips may help family and friends support the person with dementia, and also improve their own wellbeing.

• Focus on the person’s strengths. Think about what they can still do, rather than what they can’t, and make time to do these things together
• Prioritise things that give them pleasure, like visiting favourite places, listening to meaningful music, watching much-loved films, gardening or craft. Be aware that these things may change as their dementia progresses
• Help the person put together a record of their life, called a ‘Life Story’. This is an enjoyable exercise to do together, and looking at the Life Story as their condition develops may be a comfort. See Sources of support, below, for more information
• Be kind and understanding if they find it harder to control or understand emotions. Think to yourself, “Why are they responding in this way?” and, “How can I best help them?”
• Try to avoid negative comments and correcting the person if they get something wrong or muddled up
• Allow them to be as independent as is safe and appropriate, and to make their own decisions – being overprotective can cause frustration and tension between you

Support from other family members, friends, professionals and groups can make a big difference to how you and the person with dementia cope with the emotional impact of their diagnosis.

These practical tips may help.

• Seek advice, education and training to develop an understanding of dementia and what to expect – you could ask your GP or local Social Services for information on groups and courses near you
• Join a social or peer support group, in person or online – sharing experiences and advice with others in the same situation is often helpful
• Find out if there are any companionship or befriending schemes to help the person with dementia feel less isolated, and allow family carers to have a break
• Talk about the diagnosis with family, friends and colleagues so they understand what is happening and can offer support
• If the person has a rarer form of dementia, find out if there are specific charities or support groups that can provide advice and information
• Have a family discussion about future plans, such as making a lasting power of attorney and Advance Care Plan – see Sources of support, below, for more information. Preparing for the future may give greater peace of mind

If you would like to speak to a dementia specialist Admiral Nurse about the emotional impact of the diagnosis or any other aspect of dementia, call our free Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org.

If you would prefer to pre-book a phone or video appointment with an Admiral Nurse, please visit dementiauk.org/get-support/closer-to-home/.

Dementia UK information

• After a diagnosis – next steps checklist
• Managing anxiety and depression
• Changing roles and relationships
• Dealing with stigma
• Coping with distress
• Creating a Life Story
• Lasting power of attorney
• Advance Care Plans
• Dementia UK young onset dementia section
• Dementia UK young onset dementia support groups and services database
• Young Dementia Network
  A collaboration between people with young onset dementia and people working in the field to support each other and promote positive changes in dementia care

Other sources of support

• tide: together in dementia every day
• Deep: the UK Network of Dementia Voices
• Mind: the mental health charity
• Samaritans
• Carers UK