Early onset Alzheimer’s disease strikes people in their 30s, 40s, 50s, and 60s. While the majority of individuals in our country have late onset Alzheimer’s, the number of cases of early onset Alzheimer’s disease is increasing. The Alzheimer’s Association estimates approximately 5% of the Alzheimer’s population has early onset Alzheimer’s which equates to around 250,000 to 300,000. Some researchers believe the numbers of people with early onset Alzheimer’s disease to be greater than current estimates.
Below are some of the common challenges and impacts experienced. We’ve provided this information in a list format for ease of reading and to encourage others to share with us additional challenges they’ve experienced. While this list may seem overwhelming, these challenges are experienced on a daily basis and need to be recognized.
Difficulty obtaining an accurate diagnosis & treatment by medical professionals
- It can often take more than a year from the time a person first seeks medical attention for his/her symptoms to the time when a diagnosis of early onset Alzheimer’s is made.
- Individuals may be dismissed or misdiagnosed by healthcare professionals because of their young age.
- Symptoms are often attributed to depression, change of life, or stress.
- When a diagnosis of early onset Alzheimer’s is made, there is often little information provided to the individual and family regarding education and support services in the area.
Financial & Employment Issues
- For individuals under the age of 65, they are often still employed at the time symptoms are first noticed.
- They may struggle with usual job tasks, yet the reason for this change may not be understood by the person, the employer, or co-workers.
- Due to a lack of understanding and awareness of early onset Alzheimer’s disease, the individual may be terminated or leave their job voluntarily, and this may happen before a diagnosis has been made.
- The process of applying for Social Security Disability Income (SSDI) is a cumbersome process. The Social Security Administration has added early onset Alzheimer’s disease to its “Compassionate Allowance” list, which in theory is supposed to streamline the approval process. However, we continue to hear from families that their applications are denied.
- With the loss of income, savings and retirement accounts can be quickly depleted, leaving minimal resources to pay for dementia day programs, in-home care, or long-term care facilities.
Impact on the Individual Diagnosed with Early Onset Alzheimer’s Disease
- They often have insight into their condition.
- Feelings of frustration in not being able to continue activities and interests.
- Low self-esteem.
- Desire for purposeful activities that match their level of cognitive function and physical fitness.
- Dealing with the stigma of the disease.
- Frustration with becoming dependent on someone else for basic tasks of daily living.
Impact of Early Onset Alzheimer’s Disease on the Spouse / Partner
- Difficulties with coping.
- Less social support.
- Financial strain.
- Decrease of intimacy and companionship.
- Loss of confidante and best friend.
- Increased stress can be due to additional responsibilities, such as maintaining the marriage / relationship, raising children, household responsibilities, and keeping or finding employment as they may be the sole source of income.
- Spouse / partner may also be caring for children under the age of 18, as well as aging parents.
- Fear of what the future holds.
- Limited time for themselves which can lead to increased health issues.
Impact on Children in the Home Under 18 Years of Age
- Children often take on responsibilities of assisting with care for the parent, household chores, and caring for younger siblings.
- May feel shame and embarrassment regarding their parent’s symptoms.
- Experience anxiety about the stress in their parents’ relationship.
- Fear and grief.
- Loneliness as the ‘healthy’ parent is now focused on their spouse.
- Anger and frustration about caring for their parent.
- Worry and concern about getting early onset Alzheimer’s disease in the future.
- Children often will not disclose they are caring for a parent for fear they will be removed from the home.
- With respect to school, children who are caring for a parent with early onset Alzheimer’s disease may have decreased academic performance, difficulty concentrating, increased absences from school, and withdrawal from extracurricular activities.
Lack of age-appropriate services and programs
- Individuals with early onset Alzheimer’s disease may have recently left their job due to the disease, so they are looking for activities of a “work” nature.
- Shortage of professional / specialist services.
- Inadequate information, programs, and services for racial, ethnic, and cultural populations.
- Challenges finding long-term care placement as facilities are designed for and populated with older adults.
- Some memory care facilities have a minimum age requirement, which prohibits individuals with early onset Alzheimer’s disease that are younger than the age requirement.
End-of-Life
- If an individual is not on Medicare and they don’t have health insurance, end-of-life care options may be limited.
- Some hospice organizations may offer public or charity services, however the information is not readily accessible.
- Undocumented individuals with early onset Alzheimer’s disease may be less likely to seek out health care due to fear of being deported.
- There are individuals with early onset Alzheimer’s disease that die alone. Loved ones may feel that their loved one is “no longer there” and state it’s too hard to visit and be with them.
The Gayle Wells Foundation for Early Onset Alzheimer’s & Care was created to address these challenges and we are actively working to implement education, programs, and services. If you have additional challenges you wish to share or are interested in becoming part of our community, please contact Laura Sutherland, Founder & Executive Director, at laura@gaylewells.org. Together, we can make a difference in the lives of those impacted by this disease.