Receiving a diagnosis of dementia is a life changing event, not only for the person living with the condition, but also for their carers and loved ones. It is often accompanied by a range of emotions – anger, loss, sadness – and creates many new challenges.

One of the dilemmas people face when a loved one has been diagnosed with dementia is telling others. Should only close family be told, or should you let a wider circle of friends and family know?

We put the question to Colin McDonnell, dementia and wellbeing consultant with Calvary Care – should you tell friends and extended family when a loved one has been diagnosed with dementia?

An opportunity to show compassion

“I think so,” Mr McDonnell told HelloCare.

If people know that one of their friends is living with dementia, they then have the opportunity to be more compassionate and understanding to the person, and to provide support and comfort to the person and their carer, he said.

For example, in conversation friends will be less likely to correct the person or argue with them if they know they have dementia.

They can also help keep the person connected to their community, by visiting them or taking them out, say for example for a walk or to a local cafe.

“Having dementia is nothing to be embarrassed about,” Mr McDonnell said.

‘Rementia’ can hide the usual symptoms of dementia

Mr McDonnell cautioned that when you tell friends your loved one has dementia, some people may question the diagnosis, observing that to them the person seems fine to them.

Some people living with dementia continue to be able to speak fluently about old times with people they know well and in a familiar environment. Mr McDonnell uses the term ‘rementia’ for this pattern of behaviour for someone living with dementia – they can ‘seem fine’.

What these friends don’t see is the person’s behaviour at home, or in stressful situations, which has caused such a degree of concern to their loved ones that medical help has been sought, eventually leading to the dementia diagnosis.

Friends can provide support and comfort

Telling others of a dementia diagnosis also gives friends the opportunity to become more educated about how to communicate and support someone living with dementia, and to help the person remain living independently in the community for longer.

Some simple ways friends can help someone living with dementia are:

  • Keep visiting them
  • Continue to include them in social outings and activities
  • Help them take part in an activity they enjoy, for example, go for a short walk, have a coffee at a quiet cafe, go for a drive, or have a short visit with a mutual friend
  • Tap into their reality
  • Don’t argue with them or correct them
  • Listen to what they are telling you
  • Use simple language
  • Respect them

Supporting the carer

Caring for someone living with dementia is a challenging role, financially, emotionally and physically. It is one of the most challenging roles anyone can play.

People living with dementia often outlive their carers because the caring takes such a toll, Mr McDonnell said. By telling your friends and extended family about the diagnosis, you give them the opportunity to help you.

Ways that friends can support someone caring for a loved one with dementia include:

  • Keep in touch
  • Invite them to social outings and events
  • Help driving to and from appointments
  • Find out information about respite services and other dementia services
  • Cook and deliver meals

Keeping friends and family informed can be a source of great support and comfort when a loved one has been diagnosed with dementia, and can help those living with dementia to remain living independently in their community for longer.

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