What Do We Know about Early-Onset Dementia?

There is an increase in early-onset dementia cases which presents unique issues for families. Consider early testing and long-term care insurance to help.

Rita Benezra Obeiter, 59, is a former pediatrician who was diagnosed several years ago with early-onset dementia, a rare form of the disease. When this occurs in people under age 65, the conditions cause additional and unique issues because they are so unexpected and because most of the potentially helpful programs and services are designed for and targeted to older people.

One issue is that doctors typically don’t look for the disease in younger patients. As a result, it can be months or even years before the right diagnosis is made and proper treatment can start.

WLNY’s recent article entitled “Some Health Care Facilities Say They’re Seeing More Cases Of Early-Onset Dementia Than Ever Before” reports that her husband Robert Obeiter left his job two years ago to care for her. She attends an adult day care, and aides help at home at night.

If Dementia is a generic term for diseases characterized by a decline in memory, language, and other thinking skills required to perform everyday activities, Alzheimer’s is the most common. The National Institute of Health reports that there’s approximately 200,000 Americans in their 40s, 50s, and early 60s with early onset Alzheimer’s.  These numbers have lead to the consideration of Alzheimer’s legislation.  See here.  https://galligan-law.com/elder-law-community-follows-proposed-new-alzheimers-legislation/ 

One conference discussed a rise in early dementia because of the processed foods and fertilizers or the other environmental hazards, and there are definitely some genes more associated with Alzheimer’s—more so with early onset.  There is no clear answer, and most of the treatments help to slow down the progression.

There is some research showing the Mediterranean diet can be protective, as well as doing cognitive exercises like crossword puzzles and Sudoku.

It’s true that no one can predict the future of their health, but there are ways financially that families can prepare for early-onset dementia. It can cost $150,000 a year or more. That’s why you should think about purchasing long term care insurance starting at the age of 40.  You should also have your estate plan reviewed well before memory becomes a significant issue to make sure the plan facilities long-term are planning.

Long-term health insurance can pay for an aide to come into your home, and it can pay for the cost of assisted living. And, remember that health insurance doesn’t cover long-term care, nor does Medicare.  Making sure you have a financial power of attorney prepared by an elder law attorney will provide your family with the flexibility they need to handle your financial needs, bills and so on.

If you are faced with this condition or have a family history of it, consider long-term care insurance early and make sure to review your estaet plan every few years to stay up to date.

Reference: WLNY (Feb. 12, 2020) “Some Health Care Facilities Say They’re Seeing More Cases Of Early-Onset Dementia Than Ever Before”

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Choosing a Nursing Home

Choosing a nursing home is more than looking at the website and brochure, examine the data on the homes before you need them to find the right place for you.

Choosing a nursing home may be a daunting task, but the best time to shop for a nursing home is when you do not need one. If you wait until you can no longer safely or comfortably live on your own, you probably will not be in a position to do a lot of legwork to investigate facilities. Do your research well ahead of time, so you know the nursing homes in your area that provide high-quality care and, more importantly, the ones that have significant problems.

As AARP suggested in a recent article, you need to know how to spot problems at nursing homes when comparing and choosing a nursing home.  The marketing brochure, website and lobby might be lovely, but you should base your decision about a long term care facility on much more data than those things.  My article on what to look for at assisted living facilities may also be helpful: https://galligan-law.com/checklist-when-visiting-assisted-living-facilities/ Here are some tips on how to dig for possible issues and resources to review when choosing a nursing home.

  • Online search. Check out the facility’s website to get an overview of the services it offers and the industry affiliations or certifications it has. Look at the daily menus to see if the meals are nutritious and have enough variety. Most people would not enjoy eating the same main course two or three times a week. Look at the activities calendar to see if you would be happy with the planned social events. On some websites, you can view the floor plans of the resident rooms.
  • Ask your primary care doctor to name a few facilities he would recommend for his parents, and those where he would not want them to live.
  • Local Office on Aging location. Every state has an Office on Aging. Contact them to get as much information as you can about safety records, injuries, deaths, regulation violations and complaints about local facilities.
  • Your state’s Long-term Care Ombudsman (LCO). Every state also has an Ombudsman who investigates allegations against nursing homes and advocates for the residents. Your state LCO should have a wealth of information about the facilities in your area.
  • State Online Database or Reporting System. Some states have online databases or collect reports about nursing homes.
  • Medicare’s Nursing Home Compare website. Medicare maintains an online tool, Nursing Home Compare, that provides detailed information on nursing homes. Every nursing home that gets any funding from Medicare or Medicaid is in this database. You can enter the name of a specific nursing home or search for all the facilities in a city or zip code. The tool includes information about abuse at long-term care facilities. On the webpage, you can explore the Special Focus Facility section to find nursing homes with a history of problems.
  • Word of mouth. Ask your friends, relatives and neighbors to recommend a quality nursing home. Personal experience can be extremely valuable in this context.
  • Make a short list of the top candidates. After you collect as much information as you reasonably can, narrow your options down to four or five facilities that best meet your needs and preferences.
  • Visit your top choices. There is no substitute for going to a nursing home and checking it out in person. Pay attention to the cleanliness of the place throughout, not just in the lobby. Give the facility the “sniff” test. Determine whether they use products to mask unpleasant odors, instead of cleaning thoroughly. See whether the residents are well-groomed and wearing fresh, clean clothes. Observe the interaction of the staff with the residents. Notice whether people who need assistance at mealtime, get the help they need without having to wait.
  • Take online reviews with a grain of salt. Fake reviews are all over the internet. If you see a nursing home with only a few reviews, and they are all five stars, be skeptical.  But, hundreds of excellent reviews is a great sign.

Once you gather this information, you will be ready in the event you need to stay in a nursing home for a short recuperation from surgery or longer term.

References:

AARP. “Finding a Nursing Home: Don’t Wait Until You Need One to Do the Research.” (accessed December 5, 2019) https://www.aarp.org/caregiving/basics/info-2019/finding-a-nursing-home.html

CMS. “Find a nursing home.” (accessed December 5, 2019) https://www.medicare.gov/nursinghomecompare/search.html

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Funeral Planning: Not a Festive Thought, But A Kind One

Funeral planning as part of your estate plan provides clear, final wishes, names a person to execute them and helps your family cope at a difficult time.

No one wants to do funeral planning, but leaving instructions for your funeral and burial wishes relieves loved ones of the burden of making decisions and hoping they are following your wishes. In addition, says the article “Important to provide instructions for preferred funeral, burial wishes” from The Leader, it also prevents arguments between relatives and friends who have their own opinions about what they think you may have wanted.

What often happens is that people make their funeral plan and final wishes part of their estate plan.  In some states, burial wishes are found in a will.  However, this often presents a problem as the will is usually not looked at until after the funeral. If your loved ones don’t know where your will is, then they certainly won’t know what your wishes were for the funeral.  Without clear written directions, spiritual practices or cultural traditions that are important to you, may not be followed.

An estate planning attorney can help you create a document that outlines your wishes and will have suggestions for how to discuss this with your family and where it should be located.  In Texas, much like in New York as referenced in the article, there is a form that allows you to name an agent who will be in charge of your remains.  In Texas it is called the Appointment for Disposition of Remains.  You can give your instructions to that person in the document which takes the mystery and a lot of the difficulty out of the process.

In Texas, if you don’t name a person to control the disposition of remains, there is an order of priority for decision makers, including spouses, a child, a parent and so on.  If you wouldn’t want those individuals making these decisions, an Appointment for Disposition of Remains is essential.

For funeral planning, one option is to go to the funeral home and arrange to pay for the funeral and go to the cemetery and purchase a plot. In Texas, a pre-need, pre-paid irrevocable burial plan may also be excluded from Medicaid for long-term care purposes.  See here for more on that topic.  https://galligan-law.com/elder-law-questions/

Some people wish to donate their organs, which can be done on a driver’s license or in another statement. This should also be authorized on you Medical Power of Attorney so that your agent has the authority to do so.  Donating your body for medical research or education will require researching medical schools or other institutions and may require an application and other paperwork that confirms your intent to donate your body. When you pass, your family member or whoever is in charge will need to contact the organization and arrange for transport of your remains.

A comprehensive estate plan does more than distribute assets at death. It also includes what a person’s wishes are for their funeral and burial wishes. Think of it as a gift to loved ones.

Reference: The Leader (December 7, 2019) “Important to provide instructions for preferred funeral, burial wishes”

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