Dementia-Friendly Communities | Well-Being NL

Young Onset Dementia

The majority of people living with dementia are 65 years of age and older, however people can develop dementia at younger ages. Young onset dementia is diagnosed before age 65 and is a diverse condition. Young onset dementia can affect people aged 18 to 64 in different ways and can be caused by several different diseases. 

Symptoms

While many symptoms of young onset dementia may be similar to those of older people living with dementia, such as memory loss or confusion, these symptoms are not often the first signs of dementia. Dementia may affect younger people in different ways.  Common symptoms can include:

  • Personality changes, such as abruptness or insensitivity.
  • Mood swings, paranoia, fearfulness, or depression.
  • Challenges with balance or movement and/or difficulty with voluntary movement and physical coordination.
  • Challenges with problem solving, learning new things, or adapting to change at home or at work.
  • Visual challenges such as recognizing a familiar object, judging speed or distance, and depth perception.
  • Frequent lapses of memory, particularly involving recent events.
  • Becoming confused with familiar tasks such as the handling of money, paying bills, or placing a phone call.
  • Unable to recall appointments, or the names of colleagues at work.
  • Unable to find their way home or becoming disoriented in previously familiar places. 
  • Withdrawing from social contact and activities that were previously enjoyed.

The Alzheimer Society of Canada has a personal symptom checklist for young-onset dementia that may be helpful. 

There are some people who may be at higher risk of developing young onset dementia including individuals diagnosed with an alcohol use disorder, and people with Down Syndrome and other learning disabilities.

Additional information about Young Onset Dementia

Diagnosis

Getting an accurate and timely diagnosis of dementia is important, however, for younger people this often takes a longer time. This may be because:

  • Young onset dementia is relatively rare (accounts for 3% of all cases) and health professionals may not have much experience associating the symptoms in a younger person.
  • Early symptoms can be hard to recognize and can be associated with other causes such as stress, difficulties with relationships, or menopause, especially if memory loss is not an early symptom.

Parents Living with Young Onset Dementia

When a parent is living with young onset dementia, their relationship with their children will change over time. The parent living with dementia will become less able to engage with and care for their child which may lead to a role reversal where the child takes on a caregiving role for their parent.

A diagnosis of young onset dementia can be difficult for children. Parents living with dementia can try to:

  • Find activities to enjoy together.
  • Stay engaged and talk with children honestly about what you’re experiencing.
  • Find a support group for children or see a family counselor. 
  • Make your child’s school aware of your condition.
  • Keep a written, video or audio record of your thoughts, feelings, and experiences for your children.

The Alzheimer Society of Canada has tips on helping children understand dementia and activities families can do.

How to Talk to Children and Young People About Dementia

Dementia UK produced a video for children called Let’s talk about dementia to raise awareness about dementia and help start conversations.

When talking to children about dementia, listening may be the most valuable part of your conversation. 

The Alzheimer Society of Canada offer resources for speaking with children and having age-appropriate conversations:

Support for Young Caregivers

Young caregivers play an important role in their families, however the added responsibility of caregiving can have significant impact on academic performance, life at school, employment, and well-being. 

Young caregivers can find support from:

  • The Young Caregivers Association (YCA) has resources for young caregivers (ages 5 to 25), families, health-care professionals, and educators. YCA also offers a program called Powerhouse for youth across Canada. To register visit: powerhouse.youngcaregivers.ca.
  • Young Caregivers Connect (YCC) provides peer support, 24/7 helpline, and live chat support to caregivers aged 15 to 25 years at youngcaregiversconnect.ca. They have a page dedicated to caring for someone with Alzheimer’s disease and dementia. They also have tips about coping, managing emotions, and self-care. Anyone across Canada can contact the live chat or 24/7 caregiver helpline at 1-833-416-2273.

How to Support Children and Adolescents with Grief and Bereavement

Grief is a normal part of the healing process. Parents can create a safe and accepting environment to support their child through the grief experience and establish a foundation for healing.

Tips to try:

  • Encourage a regular routine that includes being physically active and getting good sleep. 
  • Be patient.
  • Allow for moments of connection and assisting in the expression of grief.
  • Listen without judgment.
  • Offer reassurance.
  • Create opportunities for healing through time outdoors, arts and crafts, writing or journaling, music, watching a movie, or spending time with friends.

Online grief and bereavement support can be found at:

As our workforce ages and people are diagnosed earlier, dementia in the workplace is becoming more common. It is important that workplaces become dementia friendly, so they can support employees in the workplace who are living with a dementia diagnosis.

Employee rights

Canadian law requires employers to accommodate employees with disabilities. The Canadian Human Rights Act states that an employer must accommodate an employee with a disability “up to the point of undue hardship, taking into account health, safety and cost.”

Employees who have been diagnosed with dementia, can work with their employer and health care provider to determine appropriate workplace accommodation options. Accommodations may change over time as the condition progresses. Supportive strategies to consider in the workplace may include:

  • allocating tasks individually, rather than all at once.
  • providing a quieter workspace with fewer distractions.
  • completing adjustments to a workspace to address visual or perceptual challenges.
  • allowing work from home.
  • offering regular rest breaks during the day or shorter workdays to reduce fatigue.
  • providing assistive technology, e.g. alerts, reminders, voice recognition software.
  • setting up a buddy scheme and regular support sessions.
  • moving to a role with less responsibility (if needed or requested).
  • asking colleagues to write down requests rather than relying on verbal information sharing.
  • having access to meeting minutes as soon as possible.

Financial supports

Since dementia is a progressive condition, there will likely come a time when continuing to work is no longer possible. At this stage, it’s important to consider other sources of income or benefits that you or a family member may be entitled to.  This may include:

After a diagnosis of young-onset dementia, couples are often able to continue to have a close, intimate relationship for many years. Close relationships can provide connection, security, and a predictable environment. 

Over time there may be changes in relationships that may include shifts in roles and responsibilities, changes in self-esteem, altered social connections, and shifts in intimacy and changes to sexual activity. Having a diagnosis can be the first step in creating supportive intimate relationships.

For more information:

People living with young onset dementia and their families can experience unique challenges. For example, the individual may still be working, raising children, providing care for an aging parent, and/or have financial obligations such as a mortgage. Making health, financial, and legal plans early can help address uncertainties about the future.

Planning for your Health (advance care plan)

A written advance care plan is called an Advance Health Care Directive and includes information and instructions about your health care treatment and who you wish to be your substitute decision maker if you are unable to make health care decisions for yourself.

For more information: ahcd-booklet.pdf

Planning for your Finances

It is important to start making financial plans as soon as possible. It may be helpful to:

  • Have regular bills paid by direct debit.
  • Have payments and benefits deposited directly into your bank account.
  • Set up on-line banking.
  • Set up a joint account.

Financial planning tools: Legal and Financial Worksheet

For more information: How to manage your money and finances when living with young‐onset dementia

Planning for Legal Matters

An estate plan outlines your wishes for your money, property, and personal items and who will manage your estate. A Power of Attorney is a legal document that gives someone the power to manage your property and finances if you are no longer able to do so. A legal professional can assist with planning for legal matters: For more information:

The Dementia Friendly Communities Program is delivered in partnership with the Department of Health and Community Services. You can learn more about the Department and their vision for a healthier Newfoundland and Labrador at the following link: www.gov.nl.ca/hcs/.

Funding for the Dementia Friendly Communities Initiative was provided in part by the Public Health Agency of Canada.

The views expressed herein do not necessarily represent the views of the Public Health Agency of Canada.