A diagnosis of dementia is often confronting. Sadly, the first emotional response is often one of shame. I say sadly, as dementia is not a self-inflicted injury, yet the stigma of dementia means that shame can complicate how individuals respond to their diagnosis.
The stigma associated with dementia can have an incredibly negative impact on the way a person diagnosed with the disease views themselves, and the way others see them. So much so, around 25%¹ of people living with dementia will hide their diagnosis from family and friends. In Western Australia alone, this equates to around 10,000 people currently living with a diagnosis of dementia who have not let anyone know about it.
Clients often say to us ‘I haven’t spoken to all of my family about it’ or ‘it is difficult to talk to them about it’. It is important to remember there is no right or wrong way of sharing your diagnosis.
A common misconception is that dementia is a normal part of ageing. This is like saying a diagnosis of cancer is a normal part of ageing. It is simply not true.
We often hear people with dementia will stop going out or attending social events, fearful of how others may perceive them. Over time they may slowly withdraw from family and friends. Yet this is a time when social connections are vital to maintaining the wellbeing of a person with dementia.
According to Dr Sean Maher, Honourary Medical Director for Alzheimer’s WA, a diagnosis of dementia is usually not a surprise to a person’s close friends and family. It can actually be a relief.
Some people worry an official diagnosis means their life is over. Life changes, but it does not end. This is perhaps the hardest stigma of all to overcome, and I cannot stress this enough… life does not stop when dementia starts. It is the beginning of a new chapter, a different path in the journey of life that was unexpected and unwelcome, just as is any diagnosis of a significant condition. But like many other conditions, with information, understanding and support, a sense of wellbeing can be established and the usual priorities of the human condition such as purpose and companionship can continue to be enjoyed.
The earlier the diagnosis, the more chance a person has of slowing the progression of the disease through the use of risk reduction strategies and trying available medical treatments. The earlier the diagnosis, the more likely a person will be able to prepare and plan to live well on the dementia journey.
It may help to re-assure your family and friends that people who have a diagnosis of dementia can still live well. There are many specialised services and supports available for people who are living with dementia.
How do you actually tell your family and friends about your diagnosis?
- Do I need to tell everyone or anyone? Some people choose to share the diagnosis with their close family and that is all. Others share with their whole network of family and friends.
- How and when should I discuss it? Some people choose to chat to all of their family together. This allows questions and feelings to be explored. Others choose to speak to people individually about the diagnosis.
- How will people respond to me? People will respond in different ways, such as being supportive, upset, dismissive or in denial. Give them some time to process it.
- Explain what has changed for you and, importantly, what hasn’t. Let people know the affect the diagnosis is having on you. For example: word finding difficulties, short term memory loss. This gives people more understanding about what dementia really is and may help reduce the stigma.
- Share how you feel about the diagnosis. Let your family and friends know how you feel about the diagnosis. Some people feel devastated, others feel relieved. This can help others process their own feelings.
- Explain how others can help. Often people with dementia want to be treated the same. Let people know if this is how you feel. Ask others to be patient and understanding as you adjust to life with dementia.
- Share our 5 Tips to Connect with family and friends. These tips were developed for Alzheimer’s WA by people living with dementia in Western Australia. Visit alzheimerswa.org.au/5tips.
If you are concerned about dementia, please contact Alzheimer’s WA on 1300 66 77 88.
¹ World Alzheimer Report 2012: Overcoming the stigma of dementia