Youngtimers Community Stories
Dan's Story - Legal & Financial Planning
A conversation about navigating the legal and financial disease journey for a loved one with early onset familial Alzheimer’s disease.
The Youngtimers Community Stories Series features interviews with patients and loved ones within the early onset familial Alzheimer’s disease community to share their insight on critical aspects of the disease journey – in the hopes of helping others to better navigate their own path forward.
Dan is a member of the early onset familial Alzheimer’s disease (EOFAD) community. His father and paternal grandmother died of Alzheimer’s disease; however, the family didn’t recognize the presence of EOFAD until Dan’s older brother became symptomatic in his fifties and tested positive for an EOFAD mutation. Dan is one of six siblings that are at-risk for inheriting the mutation and developing the disease. Dan tested negative for the mutation (meaning he doesn’t carry the mutation), and now dedicates his time to helping his affected siblings and their families.
In this video, Dan (although not a financial planner by trade) provides insight from his experience in helping his siblings navigate their disease journey (pre-symptomatic, time of diagnosis, and during the disease) to ensure financial security and quality of care and life. He walks us through important legal and financial terminology, important resources, important considerations for assembling your “team,” and the critical steps and actions for individuals to take to ensure financial security.
References to Important Resources
Alzheimer’s Association Resources:
Taking Action – The Alzheimer’s Journey Playbook
Alzheimer's Association Resource Page – Publications & Guides
Early Onset Alzheimer's Summary Report
Relevant section - Problems Confronted by People with Early Onset Dementia and Their Families and Steps Toward Solutions
Medicaid “Spend Down”- https://www.medicaidplanningassistance.org/medicaid-spend-down/
Medicaid “Look Back” - https://www.medicaidplanningassistance.org/medicaid-look-back-period/
Long-term Care Insurance Resources:
Social Security Resources:
SSDI – Social Security “is your friend” - Reach out early
SSDI Application – Compassionate Allowance
Early Onset Alzheimer's definition for Social Security Administration
Checklist for applying for Social Security Disability and Supplemental Security Income benefits due to early-onset (younger-onset) Alzheimer’s disease
Disclosing to employer (UK) - How to tell an employer
Employment after dementia diagnosis (UK) – UK law, but helpful ideas for other countries
Employer Laws - USA
Financial Planning (after a disease diagnosis) Resources:
Financial Planning – Planning for the Future After a Dementia Diagnosis – .gov resources – USA