What is young-onset dementia?
Living with young-onset dementia
Strategies for couples and intimate partners
Speaking with your children about your diagnosis
Financial and legal impact
Other resources and support
Young-onset dementia (YOD), also known as early onset dementia, occurs in people who develop first symptoms under the age of 65. It is rare and can affect people in their fifties, forties and even thirties. YOD occurs in about 5% of all people living with dementia.
The most common dementias in the young-onset group are Alzheimer’s disease and Frontotemporal dementia (FTD).
Young-onset Alzheimer’s disease first symptoms are similar to those of late-onset Alzheimer's disease and they include memory loss and word finding difficulties.
Frontotemporal dementia (FTD) is caused by a group of disorders that, over time, damage the brain’s frontal and temporal lobes. There are three groupings of FTD:
- Behavioral variant frontotemporal dementia (bvFTD) is the most common type. This dementia involves changes in personality, behavior, emotions, and judgment.
- Primary progressive aphasia (PPA) involves changes in the ability to communicate — to speak, read, write, and understand what others are saying. There are 3 subtypes of PPA.
- Dementias associated with movement disorders. There are two types of rare movement disorders associated with FTD: corticobasal syndrome and progressive supranuclear palsy. Other movement-related disorders include frontotemporal dementia with parkinsonism and frontotemporal dementia with amyotrophic lateral sclerosis (FTD-ALS). Symptoms can vary among these movement disorders.
Learn more about young-onset dementia from the Alzheimer’s Society, Rare Dementia Support Canada and the National Initiative for the Care of the Elderly:
What is young-onset dementia? - The Alzheimer's Society
Young-Onset Alzheimer's Disease - Rare Dementia Support Canada
Early Onset Dementia: Advice for Caregivers - National Initiative for the Care of the Elderly (NICE)
Those with young-onset dementia and their families face unique challenges. The person is often still working, supporting their children, and at times, even taking care of their parents. Due to their young age, they may find that others do not believe they have dementia or question the diagnosis. As a result, they may lose relationships or jobs because of this misunderstanding. Concerns about financial security, fears and uncertainties about their own future and the future of their family are issues along with feelings of anger, despair, loss and guilt. It is often very difficult for families to accept an early onset dementia diagnosis. This can then interfere with moving forward to make realistic plans for their future.
Living with young-onset dementia means that the person and their caregiver(s) will need to speak with their care team about the importance of early planning, understanding signs and symptoms, and treatment options.
There will be outcomes associated with a YOD diagnosis that families should talk about, including:
- ability to drive and transportation to and from appointments
- caregiver education and support
- financial planning and anticipated costs of living (paid caregiving, medications, in-home medical equipment)
- day programming and activities for the person living with dementia
- speaking with children about the diagnoses
- managing work
- legal advice (Power of Attorneys, creating or revising a will)
After a diagnosis of young-onset dementia, spouses or partners often feel a sense of loneliness or depression. Try to talk with each other about how you feel. Find a counsellor who works with people facing similar issues. Continue staying active in the activities that you currently enjoy or find new ones.
There is support and strategies for couples and intimate partners. Here are some helpful resources:
Couples and Intimate Partners - Rare Dementia Support Canada
Early Onset Dementia: Advice for couples - National Initiative for the Care of the Elderly (NICE)
A diagnosis of young-onset dementia is challenging for young children. They may blame themselves, become angry or depressed. Talk with children honestly and being sensitive to their emotions and fears is important. Find a support group for them. If the children are of school age, make sure their school counselor is aware of the situation. Explaining the diagnosis will look different depending on the age of the child. The Alzheimer’s Society offers excellent resources for speaking with your children and having age-appropriate conversations.
You can view them here:
What kids in Canada need to know if a parent has been diagnosed with young-onset dementia
What teens need to know if a parent has been diagnosed with young-onset dementia
What young adults need to know if a parent has young-onset dementia
Before the condition significantly affects one’s ability to do their job, talk to the employer and explain the situation. If it is overwhelming, consider reducing working hours or taking time off.
For tips on how to approach work while living with young-onset dementia, view these resources from the Alzheimer’s Society and Rare Dementia Support Canada:
Approaching work with young-onset dementia - The Alzheimer's Society
Employers and Colleagues - Rare Dementia Support Canada
People with young-onset dementia have to stop working earlier than planned. Finances get even tighter if spouses or partners leave the workforce to become full-time caregivers. Medical benefits plans and social support programs often are not available until the person is 65. It is important to plan for your future financial needs with an expert who can help organize your finances.
To read about tips on managing money and finances when living with young-onset dementia, view these resources from the Alzheimer’s Society and Rare Dementia Support Canada:
How to manage your money when living with young-onset dementia from The Alzheimer's Society
Financial and legal worksheets from The Alzheimer's Society
Legal and Financial Matters from the Rare Dementia Support Canada
Education and support are important elements of dementia care.
There are also support groups for caregivers, which offer the opportunity to connect with others in a similar situation. These groups can be either virtual or face- to- face. They are available at Baycrest@Home, the Alzheimer’s Society and Rare Dementia Support Canada.
Remember, you are not alone. Let your friends and family know what you are going through. Ask for help. Reaching out for assistance is a sign of strength.
Finding support groups:
Finding Support Groups - The Alzheimer's Society
Individual, Couple and Family Support - Rare Dementia Support Canada
Group Support and Education - Rare Dementia Support Canada
There is currently no cure for young-onset dementias. It affects everybody differently and it is crucial that everyone develops their own care plan. Sometimes, medication will be prescribed to treat various symptoms that may develop (e.g. depression, agitation or apathy). For some forms of young-onset dementia, medication may be prescribed to try to slow down the progression of the illness. In addition, approaches to maximize wellness may be suggested.
Wellness activities may include:
- Daily exercise and good sleep hygiene
- Cognitive stimulation activities
- Speech therapy for those with language problems
- Speaking with a therapist who is experienced in young-onset dementia
- Avoiding alcohol or medications that could worsen memory or certain behaviours
Speaking with your care team is the first step in developing the best approach. Make sure that you understand what your treatment plan will include, how it will impact you and what to expect.
For more treatment information, and tips for understanding your diagnosis, visit John Hopkins Medicine
For more information on treatment approaches, please visit National Institutes of Health: National Library of Medicine
Alzheimers.ca - Young-Onset Dementia
Mayo Clinic - Young-Onset Dementia
Rare Dementia Support Canada