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:
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
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
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 firstname.lastname@example.org.