Telling family and friends

Receiving any medical diagnosis is a shock. Receiving the diagnosis of dementia is no different. When should I tell them? There is no ‘correct’ way to feel at hearing the news of being diagnosed with dementia. Everybody feels and reacts differently, both emotionally and in the processing of the information. Often a person feels vulnerable and in need of reassurance and support. They look to the closest people to them – which is usually family and friends. It’s a very individual and a personal decision to make about who to confide in, and when. There is no right or wrong way. You might want time to adjust and come to terms with your diagnosis before telling other people. Alternatively, because you have a reason why some things may have become more difficult for you, you might want to tell people quite quickly. This may even bring a sense of relief. Family and friends may also have noticed that things weren’t quite right, they may have been worried about you. So seeking support and reassurance from them will not only help you, but you may also find it helps them.

How should I tell them?

There are no hard and fast rules regarding how to tell friends and family of any important changes which may have an impact upon close relationships. It’s up to you to choose the best time to tell them. Don’t feel rushed. However, you might want to tell those closest to you sooner rather than later, because of the support they will give you. Also, an early approach could allow additional time to be spent discussing and making plans for the future. Try and do it calmly. Remember, having a diagnosis of dementia doesn’t suddenly mean you or your life will change. You are still the same person. The progress of dementia can be very slow, each person experiences it in different ways. Usually, this means there is plenty of time to adjust. You are not suddenly going to be whisked off to hospital or a care home. It’s worth remembering that sometimes the best-made plans do not happen as they were intended. Keep an open mind and a flexible approach. Your family and friends may suggest things that you’d never thought of, or someone whom you’d never considered might pop out of the woodwork to offer help. Remember there is no right or wrong way to behave or lead your life just because you have this new diagnosis. Follow your own thoughts, feelings and wishes. You know best what will suit you and people closest to you.

Telling young family members

When there is a change or difficult situation within a family it is natural to want to protect children and young people. However, it is important to remember that they can pick up on moods and atmospheres extremely quickly. It is often better to be upfront about what is happening so you can explain to them in a controlled way. It can be even more upsetting for children to be aware that there is a problem and not have an understanding or reason for the increased tension within the family. Children are often relieved to understand why there is a change in a parent’s or grandparent’s behaviour. They find it easier to accept that the behaviour is due to a condition and not directed at them personally

How should I tell them?

It is best to be as honest as possible when talking to children. Try to keep sentences short and to the point, be as reassuring as you can. Adapt the information to the age of the child so it is easily understood. Children welcome honesty and the opportunity to express their own thoughts and feelings on a subject, as they arise. Give them plenty of chances to ask questions, then answer them honestly and naturally. Young children may need to be reminded of things more than once.

Coping with their reaction

Children are individuals and will react to a situation in their own individual way. Each child will require lots of love and reassurance as they may feel grief and sadness. If you feel that your child is finding his or her situation difficult, you may want to consider speaking with their teachers or a medical professional for advice.

There are some useful books on the subject:

  • Grandma’s Box of Memories: Helping Grandma Remember by Jean Demetris
  • Can I tell you about Dementia? A Guide for Family, Friends and Carers by Jude Welton