Tips and strategies for people living with young onset dementia

Share your story to help reduce the stigma around dementia:

Express yourself and help educate others. Use your experience to enlighten people around you and talk openly about the changes the disease is causing. People with the illness often feel excluded or treated differently because of stereotypes or misinformation.

Let your friends, colleagues and family members know that individuals with dementia are still people who want to continue to take part in their communities and live life to the fullest.

If you are still working, you need to research your employee insurance and health care benefits as well as Employee Assistance Program (EAP), if your company offers one, first.

Once you are informed about your options, you can talk to your employer about your diagnosis. Discuss reduced hours and/or tasks and adapting your job duties. Discuss possibilities of early retirement and start to plan for a time when you cannot work.

If you own your own business, you will want to plan for its future and think about succession planning. You can also contact the Canadian Pension Plan Disability to find out if you are eligible for benefits.

Reassure your children that you are still there for them, and that you understand the difficulties they face. They may become resentful because they feel they are not getting the attention they need. Remember that children need to feel stability despite difficult changes; it is also important for them to know that the changes they are seeing in you are due to the disease. There is no one to blame.

You can inform their teachers at school about the situation; they may be able to provide additional support.

Find activities to do together with your children and encourage open communication with them. If possible, you can try to engage them in providing you help, care and support.

See more about helping children and teens.

Talk to a financial advisor and a lawyer to help you plan ahead for your future needs. Be part of the decision-making about your financial and legal affairs, while you are able to make decisions and sign legal papers.

Make sure your money matters will be in the hands of someone you trust. Arrange for a power of attorney authorizing someone to legally make decisions on your behalf once you are no longer able to.

Make healthy lifestyle choices to feel better, slow the progression of the disease and improve your ability to cope with the changes you are experiencing.

Healthy choices include:

Download our healthy brain brochure.

Take steps to ensure your safety inside and outside of the home. Be realistic about whether you can drive and start thinking about other ways to get around. Consider registering yourself with MedicAlert® Safely Home® and talk with Alzheimer Society staff about other safety options.

Get involved and volunteer in your community. Sharing your experience can be very helpful in reducing the stigma of dementia and in encouraging others to reach out for support. The Alzheimer Society needs people like you to raise awareness of the disease in your community through public speaking or other volunteer tasks.

Support is available. Living with Alzheimer's disease at any stage can be very challenging, but remember that there are good days and bad days.

You are not alone; your local Alzheimer Society is here to help.

Contact your local Society to enquire about services for individuals with young onset and resources available in your community.

Useful resources:

Living with Young Onset Dementia – Let’s have a conversation! This ground breaking webinar is your opportunity to hear directly from two women living with young onset dementia about their experiences working with the health care system – both challenges and successes, hosted by brainXchange in partnership with the Alzheimer Society of Canada and the Canadian Consortium of Neurodegeneration in Aging (CCNA)
Early Onset Dementia: Advice for Caregivers, National Initiative for the Care of the Elderly
Early Onset Dementia: Advice for Couples, National Initiative for the Care of the Elderly
When Dementia is in the House: Advice for Parents, National Initiative for the Care of the Elderly

Last Updated: 10/13/16
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