You and the person you support may worry about how other people will react to hearing the diagnosis. Family and friends will react to dementia in very different ways:
- Many family and friends are supportive. They listen, make useful suggestions, offer practical help, and make accommodations without fuss. This can make sharing the diagnosis a positive experience and help you both feel loved and as though you have people walking beside you.
- With young-onset dementia, people might be sceptical, as dementia is often associated with ageing. Friends and family might be in disbelief or find it harder to accept that someone so young is experiencing cognitive decline.
- Some family and friends may question the diagnosis, or say things like, “You don’t look like you have dementia.” Some people with dementia feel dismissed when they hear this; others interpret it as a sign they’re still seen as themselves.
- This Dementia Alliance International webinar is an in-depth discussion about experiences of having others disbelieve you when you tell them your diagnosis and how webinar participants have dealt with being told “you don’t look as though you have dementia”.
- Some family and friends don’t know what to say and avoid the topic. This can result in feeling embarrassed and awkward when these people are around.
- Some family and friends become really upset at the news. Some might find this unhelpful because they don’t want sympathy or pity, while others might find it comforting that the other person cares so much.
- Some family and friends are overly supportive, such that you feel mollycoddled or the person you support feels like they are being ‘wrapped in cotton wool.’
- Children, especially younger ones, might feel anxious or confused. They may not fully understand what’s happening or might not know how to express their feelings. This can affect their sense of security and trust.
Because young-onset dementia often presents differently from the more typical memory-loss pattern seen in older adults, symptoms such as language problems, personality change, or movement difficulties can be especially puzzling to others. This can make disclosure feel even harder. Behavioural or psychiatric symptoms such as mood changes, aggression, or withdrawal can also affect relationships. Family, friends, and children may find these changes difficult to understand, which can create tension or misunderstandings. Clear explanations and guidance about these symptoms can help others respond with patience and empathy. Sharing the diagnosis can also increase awareness that dementia can affect people at any age. For some families, being open helps challenge stigma, correct misconceptions, and shift the idea of dementia from a ‘death sentence’ to a serious but manageable long-term condition.
The way some family and friends react, however well-intended, may not always feel helpful. The next section, 2.8 Sharing the diagnosis with family and friends, offers some ideas on how to share the diagnosis so that your family and friends have enough information and understand how to best support you.
Photo: Tyler Small via Unsplash.
