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  • Michael J. Greenberg

After an Early Stage Alzheimer’s Diagnosis

Your Spouse or Parent Was Just Diagnosed With Alzheimer’s or Dementia - What Do You Do Now?

Earlier in the month, I attended the National Association for Elder Law Attorneys (NAELA) conference in Boston, Massachusetts. I spent 3 days reviewing and learning about the special needs of our ever-aging population.  I thought I would share some ideas about how to handle issues of aging around a topic I dealt with personally after my father was diagnosed with early-onset Alzheimer’s. 

After the initial shock wears off and you have arranged for the best doctors, researched possible clinical trials, best medication, etc. - what else do you need to do? If this is a position you have recently found yourself in, you might feel helpless or confused. Know that there are steps you can take to secure your loved one’s future. 

1) Determine what benefits are available to the newly diagnosed loved one. For example, is the person working and now eligible for disability? Is there private supplemental disability coverage? If you are under age 59 ½, you will be able to withdraw from an IRA or pension fund without the steep 10% early withdrawal penalty with a qualified disability, such as early onset Alzheimer’s.  Similarly, patients diagnosed with Alzheimer’s can more quickly access Social Security Disability Insurance (SSDI) if they are below full retirement age (between 66 and 67 now and increasing over time) with a Compassionate Allowance from the Social Security Administration.  

2) Update bank accounts to protect against elder abuse in the form of financial exploitation. Sadly, family members, paid caregivers, or even strangers often convince the elderly or those with dementia to give them money.  Studies suggest that financial exploitation is the most common form of elder abuse with the majority going unreported. In 2021, there were 72,000 cases reported with an average of $39,200 per instance for victims of fraud over 80 years old. When there are trusted loved ones, like spouses or children, removing the person with dementia from accounts or moving money into a trust that they do not have direct access to but rather are beneficiaries of can be a way of protecting them from financial exploitation.  If the newly diagnosed loved one still wants to have access to their money, ideally you can limit the potential damage in a way that maintains the person’s dignity. For example, if the person is still somewhat competent, consider switching to a debit card or putting limits on spending to limit possible exploitation.  

3) Develop a short, medium, and long-term care plan and how the family will finance it. Will it be better to receive the care at home or in an assisted living memory unit or nursing home? Is there a long-term care insurance policy that can assist? How will you pay for the care? When my father was first diagnosed, he lived at home with help from daytime caregivers while my mom was working and participated in an adult daycare for those with dementia at his local JCC (Jewish Community Center), where they had painting, music, and other activities to keep the mind sharp. A few years later, when his needs became greater, he moved into an assisted living facility and, in his final days, was in a hospice. I cannot say this was exactly how we planned it, but knowing our options and what was out there was important.

4) Update the legal plan, including any wills, trusts, health care proxies, and powers of attorney. You need to ask who your loved one trusts to act in their best interests and make decisions about their health and finances when they are unable to. A plan that worked yesterday might not be the best plan today after a new diagnosis. For example, a Medicaid Asset Protection Trust might now become needed if your care plans include nursing or home care through Medicaid.  Remember to include your loved one in these conversations and ask what they want. For example, do they prefer a DNR? Do they want to be cared for at home or at a nursing home when they cannot care for themselves? Who do they want to make decisions for them? Would they prioritize spending money on top-of-the-line care or saving or heirs?

5) Have a support network to talk to. Being a caregiver or loved one of someone with dementia is incredibly painful. Make sure you have a therapist, support group, friend, partner, or someone to talk through when things inevitably get hard. 

6) Do not put off the things in life that will bring you joy. Now is the time to do one of those life story interviews! Ask for the story about how Dad met Mom, his time in college, the craziest antics he got into as a boy. Now is the time to have a family celebration, take a trip, etc.  My parents went on a couple of amazing trips to Russia, Alaska, and Turkey in the years after his diagnosis, which were beautiful memories for my mom. Seeing photographs of my father celebrating at my wedding or holding my newborn son in the hospital a few months before he died were especially meaningful.

Out in the Community

On June 5 th , Michael will be presenting on Elder Law/Elder Care to Neuberger Berman Certified Financial Planners.

On July 24th, Michael will be co-teaching a CLE class on “Navigating Conflicts in Medicaid and Estate Planning: Second or Third Marriages, Blended Families, Prenups, Postnups. Along with Brandon Arkin of Solkoff Legal, Michael will provide elder law attorneys guidance on navigating potential issues that may arise when engaging in Medicaid and estate planning for clients who have remarried.

For more information and to register at the early bird rate:


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