This article about challenges associated with early onset Alzheimer’s focuses on information that families need to have when a diagnosis is likely or has just been made. The responses to each question offer an overview for planning next steps.
What is Early Onset Alzheimer’s?
Early onset Alzheimer’s begins when a person is younger than 65, with symptoms usually starting in a person’s 40s or 50s. A small percent of people who develop Alzheimer’s have the early onset type, and a small number of these have the more common form. Others have a familial form that is linked with specific genes. Only one percent of everyone diagnosed with Alzheimer’s have this genetic form, yet it represents the majority of those with early onset (Graff-Radford, 2017).
What Challenges are Associated with Early Onset Alzheimer’s?
People with Alzheimer’s and their loved ones face a number of challenges that vary with disease progression. These include the physical, social emotional, caregiving, and financial plans to have in place for the safety and health of those involved. Early onset Alzheimer’s presents unexpected challenges because those affected are in the prime of life with multiple family and work responsibilities and interests. This factor is especially relevant because of the serious nature of this disease, including its effects on anticipated life span.
Subtle behavioral changes such as sleep disturbance, signs of depression, agitation, and language disturbances precede a diagnosis. The diagnosis presents thoughts of mortality and questions about the disease, who to turn to, and the overall effects of the disease on a family. People with early onset Alzheimer’s require special guidance about finances, health and life insurance, and workplace protections and options. As these are being addressed, a family begins to think about the long-term, including dependent care needs. These needs are determined by the disease’s effects on an individual’s behavior, the progression of physical decline, and how these symptoms respond to medical treatment.
What Services are Available for Support with These Challenges?
As you review the following, please think about the importance of pre-planning. Doing so helps to learn what to expect and when to act.
Seek support from the medical community to assure the diagnosis of Early Onset Alzheimer’s is accurate (Graff-Radford, 2017). Specialty dementia physicians prescribe treatment plans based on current recommendations.
Treatment suggestions may include physical and occupational therapy to support physical and work abilities.
Ask for advocacy and support from family, friends, and senior care service organizations. The Alzheimer’s Association provides guidance about legal protections, including the American with Disabilities Act (ADA) that relates to the workplace, and the Family Medical Leave Act (FMLA) for those who need time off from work to care for an ill family member (Alzheimer’s Association, 2018A). Local Alzheimer groups provide information and support for your family.
Financial, legal, and workplace planning occurs through family conversations in consultation with community resources that serve people with Alzheimer’s disease or dementia.
It is wise to plan ahead for home safety and the well being of all involved. Home safety assessment, planning for home care or residential needs, and learning what to expect as the disease progresses help with the decisions you will make. Businesses and organizations devoted to the care needs of people with disabilities are experienced, knowledgeable, and ready to guide you in reviewing options for planning your loved one’s care.
- Alzheimer’s Association. (2018A). Early onset Alzheimer’s. Retrieved from: https://www.alz.org/wv/in_my_community_10586.asp
- Alzheimer’s Association. (2018B). Younger/early onset Alzheimer’s & dementia. Retrieved from https://www.alz.org/alzheimers_disease_early_onset.asp
- Graff-Radford, J. (2017). Early onset Alzheimer’s: When symptoms begin before age 65. Mayo Clinic. Retrieved from: https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers/art-20048356