Dementia

Preparing for the Realities of Aging

A healthy life where you retain all your faculties and enjoy yourself, is definitely preferred to decades of dementia. We don’t get to choose, but we can plan.

As Baby Boomers continue to change the face of aging, and so many embrace the idea of genetic testing, many are confronted with a harsh picture of what their future may bring. If that includes dementia, there are facts you need to know and myths that need to be uncovered.

MP900439289The (Bryan TX) Eagle’s recent article, “Alzheimer’s disease: Five common myths, busted,”reports that, according to the Alzheimer’s Association, one in three seniors dies with Alzheimer’s or another type of dementia. There are up to 5.7 million individuals who live and die with the disease, which makes it the sixth leading cause of death in the United States. The article provides five common myths about Alzheimer’s disease.

Myth # 1: Memory loss is a normal part of growing older. A slip of the memory may well be a normal part of growing older. While these forgetful moments may cause a bit of frustration and embarrassment, they don’t affect our ability to live an independent life. However, if a loved one has trouble remembering commonly used words or loses the ability to communicate, it could be a potential symptom rather than a natural senior side-effect.

Myth # 2: Alzheimer’s can be reversed if it’s diagnosed early.No. Unfortunately, there's no treatment that will reverse the progress of Alzheimer’s disease. However, although there are therapies and drugs that can slow down the neurodegeneration associated with Alzheimer’s, there is no known cure. Even so, early diagnosis has its benefits, like better symptom management, a safer patient environment and the ability to plan for the future.

Myth # 3: Alzheimer’s just affects older people. Some Alzheimer’s patients can get diagnosed in their 40’s or 50’s. The early onset Alzheimer’s is uncommon (just 5% of patients are diagnosed before age 65); an accurate diagnosis is important to help the family cope with the realities of the disease.

Myth # 4: A diagnosis of Alzheimer’s means your life is over. Many people live years or even decades, before the disease claims their lives. Alzheimer’s effects each patient differently. The disease is commonly divided into three stages. The first or “mild” stage is where the patient is able to live a mostly normal life. The middle or “moderate” stage requires more extensive care. And in the late or “severe” stage, the patient needs 24/7 supervision and medical assistance. Life many never be the same with an Alzheimer’s diagnosis, but it’s far from over.

Myth # 5: There’s little you can do to protect yourself financially, if you are diagnosed with the disease. A serious diagnosis of any type can drastically impact a family, but it’s important to understand that there are things you can and should do to help your loved ones manage what comes next, emotionally as well as financially. Look at these ways you can help:

  • Create a list of all financial accounts;
  • Review the titles and names on each account;
  • Look at your options for paying for medical care, such as existing insurance policies, Medicare coverage, or other sources of funding;
  • Consider designating a Durable Power of Attorney for Healthcare, so that a trusted person can make decisions for the patient if there’s an accident or incapacitation;
  • Communicating preferences for living arrangements, medical assistance, and end-of-life care; and
  • Be sure your will is up to date.

Speak with an elder law attorney, who will be able to help you and your family navigate this process. He or she will also be able to recommend local resources that will help make this journey as good as it can be.

Reference: The (Bryan TX) Eagle (October 4, 2018) “Alzheimer’s disease: Five common myths, busted”

Dementia and Estate Planning, From a Voice of Experience

Professionals who have had clients with family members suffering from dementia have a greater understanding of the challenges these families face. However, living through the experience personally is totally different.

When a loved one receives a diagnosis of dementia, as described in this deeply personal article from Financial Advisor, “The Limits of Financial and Estate Planning for Dementia,” the family has to begin immediately planning for the present and the future. It is a difficult journey. This story shares the family’s experience to help others.

31904934821_c31eb11260_oThe father was an extremely intelligent man, with a master’s degree in engineering and an MBA from a prestigious business school. When diagnosed with dementia, he and family members moved quickly to ensure that the correct documents were in place, working with a trusted estate planning attorney. The family’s plan worked well, as his father was able to be active for the early stages of the disease and never injured himself or anyone else.

The elderly, and especially those with dementia, are very vulnerable. They can make poor decisions and are targets of scam artists. There were attempts to scam this gentleman, but the damage was minimal, because there was good planning and good execution of the plan, as well as safeguards.

The man’s wife used the power of attorney to get the bank to maintain strict controls over their funds. There were offers of new credit cards, personal loans and home equity loans coming from the family’s bank. She was able to stop those offers from entering the house.

As his disease progressed and he spent late nights watching infomercials and surfing the net, things started to arrive at the house that were not needed. Limits were put on his credit card. He was removed as a co-trustee for the family’s living trust. The trust document simply required two doctors to remove him as a trustee, so he could not access brokerage accounts, write checks or do any online banking.

His living will was a huge help, when he entered hospice care. When a sibling from out of town arrived, she was outraged to hear that he was not being fed. At that point, he was expected to live only a few days, and that had been his request, which was documented in the living will. After reading it, she understood that this was his wish, and a potential problem was averted.

It wasn’t all neat and tidy. The bank process took time and there was a struggle over the power of attorney, as is commonly encountered. The POA is an important document and banks preferred, as do many institutions, to have their own forms done. Some of the doctors were not as respectful of his wishes, and some were hesitant about putting in writing a recommendation that he no longer drive.

 However, despite the difficulties, three things got this family through their father’s journey. The legal documents were in place, the family was nearby and able to help out, and there were friends and others who gave tremendous emotional support.

If you suspect that a family member may be experiencing early symptoms of dementia or Alzheimer’s, it’s time to sit down with an estate planning attorney and start to prepare for what the future will bring. An experienced estate planning attorney knows the documents that will need to be prepared and will also be able to guide the family to various resources.

Reference:Financial Advisor(September 25, 2018)“The Limits of Financial and Estate Planning for Dementia”

New Law in Massachusetts Enhances Treatment and Support for Alzheimer’s and Dementia

A ceremonial signing took place in Massachusetts Governor Baker’s office

“H.4116 An Act Relative to Alzheimer’s And Related Dementias in The Commonwealth” is now law in Massachusetts, following an August 15 ceremony.

LawA ceremonial signing took place in Massachusetts Governor Baker’s office as community members, legislators and members of the administration gathered at the Alzheimer’s Association’s Waltham office, where the governor signed the new bill into law.

“Raising awareness about Alzheimer’s and dementia is key to supporting the Massachusetts families who are impacted by this horrible disease,” Governor Baker remarked in an article in theFramingham Source,“Governor Baker Signs Law Strengthening Alzheimer’s and Dementia Treatment in Massachusetts.”

“This legislation will enhance efforts to train front line caregivers on recognizing and treating dementia more effectively, and work with families of loved ones to prepare and manage the effects of Alzheimer’s.”

Senate President Karen E. Spilka noted that the important legislation acknowledges that Alzheimer’s and other dementia affect not just individuals but also communities and families. She went on to say, “as someone who has been affected personally by Alzheimer’s and dementia in my family, I am grateful for this comprehensive approach.”

There are more than 130,000 Massachusetts residents living with dementia.

“Despite its widespread impact, lack of information, fear, and stigma can prevent those affected from feeling safe, socially connected, and able to thrive in their communities. Family members often carry the financial and emotional burden from caring for their loved ones,” said Massachusetts Health and Human Services Secretary Marylou Sudders.

Sudders also said that the law brings the diseases of Alzheimer’s and dementia to the forefront.  It will promote early detection and diagnosis, reduce risk, prevent avoidable hospitalizations, support caregivers and mitigate health disparities.”

The law will create an advisory council and an integrated state plan to effectively address Alzheimer’s disease, and will require that content about Alzheimer’s and related dementias be incorporated into physicians, physician’s assistants, registered nurses and practical nurses continuing medical education programs that are required for the granting or renewal of licensure.

With the new law, doctors will now be able to share a diagnosis and treatment plan with a family member or a personal representative, within the existing framework of federal and state privacy laws. Hospitals will now be required to have an operational plan in place for recognizing and managing individuals with dementia within three years of the law’s enactment, and elder protective services caseworkers will be required to have training on Alzheimer’s disease.

Reference: Framingham Source (August 15, 2018) “Governor Baker Signs Law Strengthening Alzheimer’s and Dementia Treatment in Massachusetts”

When the Diagnosis is Alzheimer’s, What Should You Do?

The authors of a new book, “Better Living With Dementia,” say it’s time to break the “cycle of despair”

People who receive a diagnosis of Alzheimer’s disease, an incurable type of dementia, are overwhelmed by hopelessness. But two authors want to change that.

MP900407501The authors of a new book, “Better Living With Dementia,” say it’s time to break the “cycle of despair” that accompanies an Alzheimer’s diagnosis. The Washington Post discussed this new perspective with the well-credentialed authors in a recent article, “Learning To Live Well With Dementia.”

Author Laura Gitlin is dean of the College of Nursing and Health Professions at Drexel University and Chair of the Department of Health and Human Services advisory council on Alzheimer’s Research, Care and Human Services. Her co-author is Nancy Hodgson, the Anthony Buividas endowed term chair in gerontology at the University of Pennsylvania.

These leading experts on care for people with cognitive impairment, say that while there’s no cure for Alzheimer’s, there are many things that can be done to make life better for people with dementia and their caregivers.

At a minimum, people newly diagnosed with dementia should consult with the Alzheimer’s Association, the Lewy Body Dementia Association, the Association for Frontotemporal Degeneration and the government’s website, alzheimers.gov. These are all great sources of information and potential assistance. Individuals and families should also get referrals to elder law attorneys, financial planners, adult day centers, respite services, caregiver support services and other resources.

About 70% of people with Alzheimer’s and other types of dementia live at home. Few professionals ask about patients’ living conditions, even though these environments play a major role in shaping people’s safety and well-being. It’s not uncommon for professionals to fail to let patients know what to expect as dementia progresses. This can fosters isolation, which worsens their sense of despair.

Even small steps could help improve quality of life. For example, give focused attention to the home setting itself. Hire an occupational therapist, ideally with expertise in dementia, to do a home assessment and recommend modifications. It’s also important to know what to expect. Individuals with dementia and their caregivers will find their needs changing as their illness progresses.

Initially, the most critical need may be getting a reliable diagnosis and understanding more about the type of dementia identified by your physician. A new study by Johns Hopkins University reports that 60% of people with dementia haven’t been diagnosed or aren’t aware of their diagnosis.

Further, depression and anxiety may need to be addressed, because people can struggle with the reality of a diagnosis, withdraw from work or social activities and worry about the future. Looking for ways to keep people engaged with meaningful activities can become a challenge.

In the final stage, severe dementia, people need sensory stimulation, like enjoyable music or a fragrant bouquet of flowers. Addressing distress, discomfort and pain are the big care challenges.

The challenge for family members and caregivers is to let dementia patients know that they belong and are surrounded with warmth and affection, at every stage of the disease. Even if they cannot acknowledge the presence of family and friends, their company is important.

Reference: The Washington Post (August 9, 2018) “Learning To Live Well With Dementia”

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