Dementia Aware: what you need to know about younger people with dementia (YOD)
Young onset dementia, also known as early onset dementia, is a term used to describe any of the neurocognitive disorders (dementias) diagnosed in someone under the age of 65 years.
Due to the population increase from the Baby Boomer generation, young people developing young onset dementia is becoming more common, with approximately one person in every 1000 below the age of 65 developing young onset dementia (Draper and Withall, 2016).
In 2016, approximately 200,000 people were diagnosed with young onset dementia in the United States, 42,325 in the United Kingdom, 25,938 in Australia, and 16,000 in Canada.
Whilst each person’s experience with dementia is different and although the symptoms of dementia are similar regardless of age, younger people with dementia have many different needs and challenges compared to the older person with dementia.
The most common types of young onset dementia include:
- Familial Alzheimer’s Disease (30 percent)
- Vascular dementia (18percent)
- Frontotemporal dementia (12 percent)
- Alcohol related dementia (10 percent)
- Lewy Body dementia (10percent)
- Rare and unusual dementia (20 percent)
- Down’s syndrome dementia
- Creutzfeldt Jakob disease(CJD)
- HIV- neurosyphilis
- Corticobasal degeneration
Young onset dementia can be difficult to recognise and can mimic other illnesses e.g. depression, anxiety, stress related illnesses, peri-menopause. It is extremely important that any person suspected of having early onset dementia has a full assessment: cognitive and neurological assessment, blood work, and CT scan of head.
Some of the early signs are:
- Memory loss
- Easily stressed, frustrated or angered
- Behaviour and/or personality change “does not seem like him/herself”
- Changes in walking, balance, coordination
- Subtle changes in communication e.g. forgetting words, mixes up words
For the young person, the diagnosis of dementia is much harder to accept as it is completely unexpected; it is a lifechanging moment for ‘everyone’ in the family unit. The person is usually in the prime of life, employed, supporting and caring for a family, socially outgoing, physically active and healthy, he/she may also be caring for older parents. Now, the person, the entire family must adapt to a different way of life, to the changing circumstances, and to the changing roles and responsibilities.
Emotional
The emotional impact upon hearing the diagnosis will be different for each person, and can range from disbelief, denial, frustration, anger, sadness, and depression. All these emotions are perfectly normal and to be expected. Consider going to family counselling, the opportunity to share feelings and fears will help everyone as they try to understand the diagnosis, If the dementia is genetic, then counselling/testing may be necessary. You may want to share the diagnosis with friends; it is your decision; however, it is a good idea for you to have a support network of people you trust who can help support you and your family.
Social
It important to remember you can still do the things you enjoy and live a full life. Yes, it will be different, you will likely have to make some changes; however, living well means adapting to changes as they occur. Continue to meet with friends, go out for dinner, hockey games, etc. Unfortunately, many community programs for dementia support the older/retired person and may not be a good fit, so contact the Alzheimer’s Association at 1-800-272-3900 for information about resources and supports.
Financial and Legal Planning
The sooner you make decisions about your health care, your finances and your estate, the more in control you will feel and the better prepared you are for the future and ensuring your family are taken care of. You should have:
- Will
- Filed income tax
- Durable Power of Attorney for HealthCare *
- Advance Health Care Directive which is a written summary of your wishes and instructions for future health care*
- If you are the ‘Breadwinner’ talk to a Financial Advisor/ Bank re: assets, mortgage, debts
- Advance Directives for Financial and Estate Management*
- For advice re: disability, financial aid, healthcare insurance support see alz.org
*For further information on Legal, Financial and Healthcare Planning: www.patientsrightscouncil.org
Working
You may be able to continue working, however, if your job requires driving, operating machinery, or may affect safety, then your Employer must be notified. Depending on the work you do, some adjustments to work environment and/or work schedule may be necessary. Working will provide income, socialization, a sense of purpose/satisfaction, and a temporary distraction.
Daily Life
- Follow a healthy diet, exercise, cognitive stimulation exercises
- Continue to participate in sporting, social activities
- Focus on your strengths, remain active and involved in family life and community activities
- Initially, you may continue driving, however, over time, you may find it becomes more difficult and not safe. Talk with your Doctor and family. If you wish to continue driving, you will be required to take a road safety test
- If mobility or balance is worsening, consider using adaptive aids e.g. shower stool, grab bars and request a home safety assessment from Home and Community -Based Services or local health care provider
- To help stay organised and remember appointments, keep a journal or diary, write important events on large calendar on wall or refrigerator, look at assistive technology options e.g. talking clock, medication reminders
- Write letters, make videotape, compile a memory book for family and friends
Resources for People with Young Onset Dementia and Caregivers:
- facebook.com/YoungOnsetDementiaSupportGroup?fref=ts
- uwaterloo.ca/…./young-onset-dementia-us-us-guide
- youngdementiauk.org
- young-dementia-guide.org
- youquest.ca
- com/Alzheimer’s/guide/caregiver-early-onset-dementia#1
- icarefamily.com
- nih.gov/alzheimers/early-onset-alzheimers-disease-resource-list
- alz.org
- https://muchtooyoung.com/
- ca/tools-early0onset-dementia-advice-for-caregivers
- www, alzheimersspeaks.com
- castanet.net/edition/news-story-207183-124-.htm#207183