Assistance may be on the way for those with younger-onset Alzheimer’s disease.
Elder law issues can also affect those under 65. About 200,000 individuals aged less than 65 have younger-onset Alzheimer’s disease, according to Clay Jacobs, executive director of the Greater Pennsylvania Chapter of the Alzheimer’s Association.
“The need to reach everyone affected will grow significantly in the coming years,” he said.
A bipartisan effort in Congress to make these elder care services available to younger people affected by Alzheimer’s disease recently resulted in the introduction of new proposed legislation known as the “Younger-Onset Alzheimer’s Disease Act.”
Nutritional programs, supportive services, transportation, legal services, elder-abuse prevention and caregiver support have been available through the “Older Americans Act” since 1965. However, under the current law, only individuals over 60 are eligible for these kind of elder care services.
“These programs would make a huge difference in the lives of individuals living with younger-onset Alzheimer’s disease, who don’t have support services available to them,” said a Congressional hearing witness Mary Dysart Hartt of Hampden, ME, a caregiver to her husband, Mike, who has young-onset Alzheimer’s.
Another bipartisan effort in Congress affecting elder law involves the proposed “Lifespan Respite Care Act” to help communities and states provide respite care for families. This legislation would earmark $20 million for fiscal year 2020, with funding increasing by $10 million annually to reach $60 million for fiscal year 2024. The program lets full-time caregivers take a temporary break from their responsibilities of caring for aging or disabled family members.
Elder law attorneys are following this legislation in hopes that the new laws, if passed, will provide additional ways to help those afflicted with early onset Alzheimer’s disease and to ease the burdens on full-time caregivers.
Estate planning attorneys recommend clients consider writing an ethical will or legacy letter.
Unlike a legal will, an ethical will, which is sometimes called a legacy letter, is not written by attorneys, but by individuals. They include life lessons, family stories, values, define hopes for the future for loved ones, apologies to anyone they have hurt and gratitude to those who haven’t been thanked enough. When the discussion turns to ethical wills, people often sigh and say they wish they had such a document from a parent or a grandparent. For that reason, more and more estate planning attorneys are recommending that, in addition to a traditional will, their clients consider writing an ethical will or a legacy letter.
Anyone can write a an ethical will or a legacy letter, and it can be directed to anyone.
Estate planning attorneys often suggest to parents of young children that they detail in an ethical will or legacy letter how they they want their children to be raised, if they are not there to do so, themselves.
People without children can create ethical wills to share them with the friends who have become their family. For example, there was a woman who had been placed in child protective services, because her parents were not able to care for her. She wanted to write a letter to other foster children to share her story and let them know that they too could overcome a rough start to life. There are other examples of how people approached preparing a legacy letter that your estate planning attorney can share with you.
Whoever you are, you have a story to tell. You don’t have to be a war hero or win a Nobel Prize to have a story that will be loved by your family, friends, or even strangers. Every one of us has a unique journey through life, and we all have lessons, stories and values to share.
The process of writing an ethical will can bring great peace of mind. By writing an ethical will, you’ve created a legacy that will live on, long after you are gone. For some people, writing a legacy letter to share their values fosters clarity of their values. That leads them to start living their life more intentionally.
For a regular will and an estate plan, yes, you need an experienced estate planning attorney. However, with a legacy will, you can do it on your own. Don’t worry too much about format or grammar in your legacy letter. Whether your legacy letter is elegant or rough, simple or complex, as long as it contains the truth, it will be a wonderful gift.
Tell stories to share your values; they are better than lists of what matters to you. One woman wrote a story about signing a contract for a job that she thought was clerical but turned out to be factory work. She fumed about it, but her parents explained that she had signed a contract and made a commitment. She stuck with the job, learning about integrity, persistence and diligence. After that job was completed, the employment agency sent her on great assignments, because they knew she was reliable and stuck to her word. That’s a life lesson to share.
There are some things that should be left out of a legacy letter. Criticism, judgments, regrets and family secrets need to be given serious consideration. What are you trying to accomplish with a letter that will be shared among generations? You don’t want to leave behind a legacy of destruction. If you write such a letter, read it a few times over a period of time to see, if that’s really how you want to be remembered. You can always tear it up and start over again.
Ask a trusted friend or your estate planning attorney to have a look at your legacy letter. They may see omissions that hurt the ones you love, like the woman who wrote about her two children, but devoted pages to one and not the other. An objective reader will be able to help you avoid some pitfalls.
Videos and recordings are great. However, remember that technology changes, and the phone that you record your video on may not work in five, ten, or fifty years. Include a hard copy of the letter and add hard copy family photos. Those will work, regardless of changes to technology.
Finally, consider sharing the letter with members of the family before you die. What a wonderful gift to share. This way you can expand on the stories, mend wounds, answer questions and grow closer.
When is the best time to create your legacy letter? How about now?
If you aren’t sure how to start writing a legacy letter, there are websites and books about this topic, including online templates. There are no legal requirements for a legacy will. You are free to create a document any way you want. If you need assistance, let us know. The estate planning attorneys at The Galligan Law Firm would be happy to share their thoughts with you and suggestions based on how others have approached creating a legacy letter.
