The 52 year old woman’s family first started to notice changes when she missed two meetings. Juggling projects that used to be a breeze for her became confusing and a chore. Soon her family observed other odd behaviors; lost jewelry, lost keys, forgetting the names of friends. They became concerned. Finally her family persuaded her to see her doctor. The diagnosis: early onset dementia.
Early onset dementia, or EOD, affects individuals under the age of 65 and many are in their 40s and 50s. The latest estimate from the Alzheimer’s Association puts the number between 200,000 and 640,000 Americans with EOD and other dementias. As this number rises I want to provide you with information on EOD in case you would ever have the symptoms. Furthermore, I have included pertinent information on caregiving for women who already have someone in the home with this devastating disease.
Causes of Dementia
The Alzheimer’s Association explains that dementia is caused by damage to brain cells. This damage interferes with the ability of brain cells to communicate with each other. When brain cells cannot communicate normally, thinking, behavior and feelings can be affected. Many times it is a puzzle as to why a person will have EOD, but scientists have found a rare gene in some people who develop the symptoms early in their lives. Scientists are researching other causes of EOD.
Diagnosis of Early Onset Dementia is Difficult
The path to finding a diagnosis for EOD can be tedious and drawn-out. Health care providers may not immediately diagnose dementia because they may look for other causes for your symptoms, such as stress, medications or other diseases. There is not a specific blood test or X-Ray that can diagnose EOD. You can keep a written log of symptoms you notice to report to your doctor to help pinpoint the diagnosis.
Challenges with your memory in these areas are important to share with your doctor.
1. Learning new information
2. Remembering appointments
3. Balancing your checkbook
4. Finding your way to familiar places such as your drugstore, bank or church
5. Finding the words you want to say
6. Repeating yourself during conversations
7. Difficulty focusing while you are at work or when completing daily chores and activities
Treatment for Early Onset Dementia
The class of drugs presently used for EOD patients is cholinesterase inhibitors. These inhibitors help treat symptoms of short term memory loss, thinking, language use, and decision making.
Consequences of Early Onset Dementia and the Family
When the dementia makes it too difficult for a woman to keep working, the loss of income can strain the family. Job loss can be common when dementia interferes with daily job requirements. Women with an EOD diagnosis should take precautions before symptoms worsen to set up a budget with a financial planner. She should discuss early retirement options with her boss and inquire about health insurance to see what benefits could be available to her and her family. Women should investigate to find out if the company has disability insurance or if she can receive Social Security Disability Insurance.
Romantic relationships become fragile when one partner is facing an EOD diagnosis. These couples are definitely in need of extra support and counseling.
When a woman is diagnosed with EOD and she has children at home, the children could feel isolated, angry and confused. The children may wish to join a support group or seek out a school counselor to share their feelings.
Fortunately Local and National Support is Available
You are not alone! Support groups, educational materials and resources are available for women and their families to help them through these confusing and challenging times. Some excellent resources are:
• Alzheimer’s Association – Local chapters provide referrals to resources and services, and sponsor the Safe Return Program, support groups, and educational programs. www.alz.org
• Alzheimer’s & Dementia Alliance of Wisconsin – Helps guide individuals and caregiver’s through the complex maze of issues that can arise by offering personal consultations, education, access to resources and advocacy. www.alzwisc.org
• Alzheimer’s Disease Education and Referral (ADEAR) Center –Compiles and disseminates information concerning Alzheimer’s disease for health professionals, patients and their families, and the public. It is a service of the National Institute on Aging (NIA), which conducts and supports research about health issues for older people, and is the primary Federal agency for Alzheimer’s disease research. www.alzheimer’s.org
• Eldercare Locator – A nationwide public service of the U.S. Administration on Aging connecting individuals to support and resources for older adults and their families. www.eldercare.gov
• Wisconsin Alzheimer’s Institute – Provides programs and services that support persons and families affected by the disease including Memory Clinics in 28 Wisconsin counties. They also conduct research in Alzheimer’s disease prevention. www.wai.wisc.edu
• Wisconsin Alzheimer’s Disease Research Center – Conducts clinical research as part of the process used to develop new medical treatments and technology. Clinical research studies are conducted with human volunteers or on samples collected from human volunteers. www.adrc.wisc.edu
Caregivers
The difficult and unusual circumstances of EOD can cause a husband, wife or other family members to be thrust into the role as caregiver without much warning. An EOD patient may have hallucinations, physical pain, disorientation, aggression, fatigue or side effects from medications. Caregivers play a crucial role in meal planning, doctor visits, medication dispersal as well as other household duties. With all of these new experiences, the caregiver needs education, support and training. Local chapters of The Alzheimer’s Association, church groups and other non-profits in your city can provide this much needed guidance for caregivers.
Preventative Steps to Remain Brain Healthy
While EOD can affect any woman, being proactive with your health certainly provides benefits for your body. I want to inspire you to:
• See your doctor for regular exams.
• Exercise and choose a healthy diet.
• Cut back on alcoholic drinks and quit smoking.
• Reduce stress in your life by finding time to relax each day.
• Be social with your family and friends.
Reach Out to Early Onset Dementia Patients and Caregivers
Our loved ones with early onset dementia are in need of our kindness, time and support. Ask how you can support them or their caregivers during this journey. Be empathetic! Reach out when someone else needs you!
Because it all begins with a healthy woman…
Sue Ann Thompson is founder and president of the Wisconsin Women’s Health Foundation (WWHF), a statewide non-profit organization whose mission is to help Wisconsin women and their families reach their healthiest potential. WWHF provides programs and conducts forums that focus on education, prevention, and early detection; connects individuals to health resources; produces and distributes the most up-to-date health education and resource materials; and, awards grants and scholarships to women health researchers and related community non-profits. To learn more, visit wwhf.org or call 1-800-448-5148.
