It’s never easy to share distressing news with your loved ones and there’s no right way to tell them you’ve been diagnosed with Alzheimer’s disease.

Once you’ve had time to process the news, only you can decide when and whom to tell about your diagnosis. This will depend on the people involved and the strength of your relationship with them.

Remember that an illness such as Alzheimer’s affects everyone in the family. Family members and friends may instinctively want to over-nurture you when they hear the news, but that would not be good for your self-esteem, so talk to them openly about how you feel.

Before you talk things over with your family and friends, consider getting some professional help from a social worker, support group or a specialist dementia organisation if you’re worried about how they’ll cope with the news. It will also help you to talk about your own feelings and fears.

Here are some guidelines:

– Try to discuss matters in a calm way – accept that people may be upset and emotional at first.
– It’s important to talk about your own wishes for the future. If being independent and making decisions together for as long as possible is important to you, say so!
– You’ll need to discuss putting a long-term plan for the future in place. This will include looking at creating an Enduring Power of Attorney (EPA) to legally authorise a trusted person to look after your legal and financial affairs when you’re no longer able to do so.
– You may also need to discuss the idea of getting a carer to assist you at a later stage.
– Avoid asking people to make promises they may not be able to keep.
– Discuss putting your affairs in order and ask for help if necessary. This includes ensuring that important documents are easily accessible and updating your will or making a new one.
– Focus on the things you can still do, but also don’t be afraid to tell your loved ones about aspects you’re finding more difficult. This will help them cope more easily with the changes.

Breaking the news to children

– Try and be as honest as possible when telling children about your illness, even though they may find the information upsetting. They need clear explanations and reassurance – it will help them feel less anxious and confused.
– Make sure you explain the situation at a level that’s appropriate to the child’s age and comprehension.
– It also helps to give children some practical examples of how you may change, such as getting words mixed up or forgetting someone’s name.
– Encourage them to ask questions and talk about things that might worry them.
– Stress that you still love them, even though you may sometimes be irritable, act strangely or not give them enough attention.

(Source: Alzheimer’s South Africa, www.alzheimers.org.za)

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