- Dealing with feelings about a dementia diagnosis
- Coping with day-to-day emotions and feelings
- Dealing with stress and anxiety
- Managing depression
- Living and transforming with loss and grief
- Dealing with the stigma of dementia
Over the years, a number of false ideas have been created about dementia. This creates stigma around dementia and those living with it. It is important to be aware of the realities of living with dementia so that people living with dementia are better understood and supported.
Frequently asked questions
What are some of the common misunderstandings associated with dementia? Click for answer
Misunderstandings about dementia can cause fear, harm and suffering for those diagnosed with dementia and their family members. But people with dementia and their family members find ways to rise above this fear and stigma. Over the years, a number of false ideas have developed around dementia. These myths can prevent people from understanding the disease and how to live with it. The following list includes myths and realities.
Myth
Because someone in my family has dementia, I’m going to get it.
Reality
Both young-onset and late-onset Alzheimer’s disease can have a genetic component. Three genetic mutations are clearly associated with young-onset Alzheimer’s disease. If your parent has one of these mutations, you have a 50/50 chance of developing young-onset Alzheimer’s disease. Late-onset Alzheimer’s disease develops due to a combination of our environment, lifestyle and our genes.
Myth
Dementia is an old person’s disease.
Reality
Not everyone will develop dementia as they age. People in their 40s and 50s can also be affected. Dementia is not a normal part of aging.
Myth
There is a cure for dementia.
Reality
There is no cure for dementia but there are medications and activities that can help people manage their symptoms.
Myth
Memory loss means a person has dementia.
Reality
Many people have trouble with their memory, but this does not mean they have dementia. When memory loss affects a person’s daily functioning and their judgment or their communication ability, [or if your memory loss is out of the ordinary for you], it is best to visit a doctor.
Myth
Aluminum causes dementia.
Reality
There is no conclusive evidence to show that aluminum causes dementia.
Myth
Dementia is preventable.
Reality
There is no conclusive evidence that dementia can be prevented. However, there is more evidence that lifestyle choices that keep the body and mind fit may help to reduce risk. These choices include physical exercise, a healthy diet, being social, and keeping your brain active.
Myth
Vitamins, supplements and memory boosters can prevent dementia.
Reality
More research is needed in this area as there are no conclusive studies.
Myth
If I am diagnosed with dementia, my life is over.
Reality
Many people who live with dementia have meaningful and active lives. Earlier diagnosis, medications and keeping active can help with this. It is also important to provide appropriate services and support to people with dementia to enrich their quality of life.
Myth
People with dementia lose a sense of self.
Reality
Much research refutes this claim and in fact demonstrates the continued personhood of persons living with dementia. Even as dementia progresses, people with dementia continue to reflect aspects of their identity in their actions and mannerisms.
Myth
All people who have dementia experience distressing changes in their behaviour
Reality
Dementia affects everyone differently. For the person with dementia, memory loss can be frightening. By learning about dementia and changing the way we communicate with someone with dementia, behaviour changes can be managed, or better yet, prevented.
Myth
People with dementia do not know what is going on around them
Reality
Many people with dementia do understand what is going on around them. When we assume someone does not understand or is unaware, feelings can be hurt. A person with dementia is still the same person as before and needs to be treated with respect and dignity.
Myth
People with dementia are no longer able to participate in decision making or make meaningful contributions to their own care and the care of others.
Reality
The actions of so many people with dementia have proven this myth wrong. People with dementia do have the right to be and capability to be actively involved in decision-making about their care, especially in the early stages of disease progression. They are also able to share important aspects of their experience that can help inform their care even into later stages. People with dementia around the world are involved in designing programs and tools to help support others, as peer mentors supporting others with dementia, and as strong advocates for the dementia cause presenting at professional and academic conferences. People with dementia have much to contribute to the dementia cause.
Source: List reprinted with revisions and additions and with permission from Alzheimer Society of Canada. (2005). Dispelling the myths. Toronto, Canada: Alzheimer Society of Canada.
What are ways to cope with stigma? Click for answer
Unfortunately, stereotypes surrounding dementia still exist, but there are ways to cope with the stigma these stereotypes create in society, which include:
- Finding friends or family members who are supportive and willing to listen
- Being positive
- Maintaining your sense of humour
- Connecting with groups in the community who support you, and can take action with you
- Remembering to live life to the fullest and considering what makes life meaningful to you
- Talking, writing and sharing your experiences
- Speaking out about dementia and challenging the stereotypes
Source: Compiled with permission from Bryden, C. (2011, March). Coping with stigma and fear. Presented at A Changing Melody International, Toronto, Ontario.