Early onset dementia, also referred to as younger onset dementia, describes any form of dementia that develops in people under 65 years old. Alzheimer’s disease is the most common cause of dementia in younger people.
Alzheimer’s and dementia symptoms are the same at any age. The signs and symptoms of early onset dementia may include:
- Memory loss
- Bouts of confusion
- Difficulty with familiar tasks
- Challenges with language or communication
- Behavioral or personality changes
- Listlessness
- Difficulty following plots and storylines
- Social withdrawal
Risk Factors
A 2013 study that followed nearly half a million Swedish men enrolling in mandatory military service from 1969 to 1979 at the age of 19 identified nine risk factors that contribute to early onset dementia. These, in order of importance, are:
- alcohol intoxication
- stroke
- use of antipsychotics
- depression
- father’s dementia
- drug intoxication other than alcohol
- low cognitive function at the time of enlistment
- low height at the time of enlistment
- high systolic blood pressure at the time of enlistment
Identifying these risk factors early on are important for applying intervention strategies for the prevention of early onset dementia.
When to seek medical help
Anyone who suspects they have early onset dementia should consult with a doctor as soon as possible. An early diagnosis will allow the person to get support and access to treatment, and with preparation, could help mitigate the negative impact dementia has on work, finances, and relationships.
Impact of early onset dementia
Dementia has a much different impact on younger people than it has on older ones. A person below the age of 65 who is living with dementia is likely to have a full-time job, or might still be actively raising or financially supporting a family.
People who develop early onset dementia or Alzheimer’s disease who still working when their symptoms emerge might find their jobs to become more difficult, and may experience changes in their performance or behavior. This can be psychologically difficult for the individual.Because dementia in a younger person is unexpected, their conditions are likely to not be understood or addressed immediately. Family members, coworkers, and others may be less likely to fully understand the person’s situation.
People who leave their jobs before getting diagnosed may be denied employer assistance that is provided to people with disabilities.
What should I do after an early onset dementia diagnosis?
An early onset dementia diagnosis can be overwhelming, but resources and support are available to help you get through it with less difficulty. It’s always better to get help earlier than later.
Here are things that younger people living with dementia will usually have to consider.
Work
Alzheimer’s disease, the most common form of early onset dementia, is considered a disability under the Americans with Disabilities Act (ADA).
If you have been diagnosed with early onset dementia, it’s important to have a conversation right away with your employer to discuss reasonable accommodations.
Many people living with dementia can still continue to work productively, but may perform better with some adjustments to roles and tasks. Awareness and openness with employers and coworkers are key.
If you are considering early retirement, ask your employer if they have disability provisions in their insurance or pension plans.
Legal and financial matters
People living with early onset dementia can enjoy happy, productive lives for many years after diagnosis. By being highly proactive in planning your finances and legal needs, you can maximize your long-term happiness and minimize stress. It’s best to make decisions early on.
Talk to a financial counselor who can help you sort out your assets, investments, insurance, and other matters.
Organize all important legal and financial documents, such as insurance policies, Social Security information, and wills, and give access to a highly trusted family member or legally-assigned 3rd party who can help manage your affairs in the future.
Getting support
Those who have been diagnosed with early onset dementia may be eligible for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits.
Individuals are considered disabled under federal law if they meet the following conditions:
- They cannot do work that they did before
- They cannot adjust to other work because of their medical conditions, as decided by Social Security
- Their disability has lasted, or is expected to last for at least one year, or to result to death
Through the Compassionate Allowance (CAL) initiative, the processing of SSD and SSI may be expedited for the following diseases:
- Adult-onset Huntington’s disease
- Creutzfeldt-Jakob disease (CJD)
- Early-onset Alzheimer’s disease
- Frontotemporal dementia (FTD), Pick’s disease – Type A
- Lewy body dementia
- Mixed dementia
- Primary Progressive Aphasia (PPA)
- Progressive Supranuclear Palsy (PSP)
- The ALS Parkinsonism Dementia Complex
To learn more about how to apply for Social Security benefits with an early onset dementia diagnosis, visit the Alzheimer’s Association.
Additionally, there are numerous support groups available for individuals with early onset dementia. Finding and connecting with others living with early onset dementia can help you feel understood, supported, and confident.
Taking care of yourself after an early onset dementia diagnosis
Being diagnosed with early onset dementia can cause grief, shock, and disbelief for the person living with the disease, as well as their family and friends. But you can still have a very happy and enjoyable life… and good health can be one of the most crucial elements of it!
Taking active steps towards self-care can go a long way in making the disease more manageable. Here are ways to care for yourself during this time:
Looking after your health
Keep a healthy and active lifestyle as much as you can by doing regular exercise and eating a balanced diet.
Focus on getting 8 hours of good sleep. Sleep has been shown to positively impact both your memory and your health.
Make sure you are taking your medication as prescribed by your doctor. Also, be careful with alcohol, and watch out it’s potential interactions with your medication.
Getting through daily tasks
Dementia may cause daily tasks to be harder than they used to. You might find yourself taking a while to finish tasks, cook, or do the chores.
Don’t be afraid to give yourself more time to get through the day, and to take breaks.
Also consider asking for help from family members and friends.
Incorporating therapeutic activities for people with dementia into your routine can help in improving daily happiness and quality of life. The Joygage app features a selection of strategically curated and research-backed content such as movies, music, games, and more.
Managing memory loss
While memory loss is a core part of dementia, it’s something that can be managed. And like many things in life, the better you manage it, the less impact it will have on your stress level and happiness. There are many proactive steps you can take.
For example, write things down, and make use of planners or whiteboards displayed in a prominent place in your home.
Have one place to store important belongings such as your keys, wallet, medications, or eyeglasses. Post labels on drawers, cabinets, and other containers with a list of their contents, so it will be easier for you to find things you might need.
Compile important information such as the names of people you contact regularly, your address and a map to your home, emergency phone numbers, and contact numbers of family members.
When going out, carry identification with you at all times. Your name, address, and emergency contact information should be on your person should you need assistance from others to find your way.
Communication and relationships
It’s important to stay close and in touch with friends and family, even after your dementia diagnosis.
When you are ready to reach out to others, let them know that you have a condition that makes it difficult for you to communicate, and that affects your memory and cognitive abilities. You may be surprised how supportive they are.
It’s okay to ask people to repeat what they said. If you lose your train of thought; don’t worry, you can always come back for it later.
Conclusion
A diagnosis of early onset dementia initially can initially feel devastating. But a positive mindset that focuses less on what you’re losing and more on how to maintain a joyful and vibrant life will leave you happier and less stressed. Taking steps proactively to stay mentally, physically, and socially engaged will help you feel more confident and in control.