Alzheimer’s

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”

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”

What Happens When an Estranged Daughter Shows Up…After Her Father is Gone?

Kim, who goes by the name Viola La Valette, is after part of her father’s $900 million estate.

She says her father was suffering from Alzheimer’s disease, and that’s why he cut her out of the will. However, she also hadn’t seen or spoken to him for more than two decades.

GrundyregThere’s a big estate battle brewing in Britain, where the 61-year-old daughter of Reg Grundy, Kim Robin Grundy, is challenging her father’s second wife with a will contest. Kim, who goes by the name Viola La Valette, is after part of her father’s $900 million estate. The fact that she refused to see him, even while he was supporting her, is not making her a popular figure.

Starts at 60’s article, “Reg Grundy’s daughter says he had Alzheimer’s when he cut her from will,” says that the TV tycoon, who was responsible for Australian shows like Neighbours and Wheel of Fortune, died in May 2016 at the age of 92. He left the majority of his estate to his wife.

However, his daughter is now investigating his mental state and health before he died.

La Valette, who is Reg’s daughter from his first marriage to Patricia Lola Powell in 1954, appeared in court recently to formally contest the will.

Her attorney reportedly claimed that Grundy suffered from “Alzheimer’s disease and cognitive impairment” before he died.

It was previously reported that La Valette refused to see her father and cut off all contact with him for more than 20 years before he died, which left him heartbroken. His wife said at the time that he had always supported his daughter and allowed her a glamorous lifestyle. Because of this, she never had to work and could live in luxurious hotels.

Alzheimer’s disease is one of more than 100 types of dementia. The disease presents differently in each individual. As a result, it’s difficult to definitely know when a person may lose his capacity to make important decisions.

The term “capacity” means that an individual has the ability to understand decisions about important personal matters, can voluntarily make those decisions and can communicate those decisions to others. Because of the unknowns with Alzheimer’s disease and dementia, it’s crucial to make plans while a person still has capacity.

Having a will in place in the early stages of any type of dementia or before any issues of capacity arise is critical to the success of an estate plan.

It’s not yet known if Grundy really had Alzheimer’s disease or any kind of dementia.

Reference: Starts at 60 (August 6, 2018) “Reg Grundy’s daughter says he had Alzheimer’s when he cut her from will”

Diagnosis for Early Onset Alzheimer Not an Easy Matter

For younger patients, early-onset Alzheimer’s symptoms are usually disregarded or blamed on fatigue, depression or stress.

Bigstock-Beautiful-woman-looking-throug-20311445It often takes a very long time before a young person having problems with memory loss or confusion is diagnosed with Alzheimer’s disease. The Concord Monitor reports, in “Stolen Memories: Problems with diagnosis of younger-onset Alzheimer’s,the delay in diagnosis can lead to problems with work and health insurance coverage.

One-third of the people with younger-onset Alzheimer’s, who responded to a 2006 survey by the Alzheimer’s Association said it took them somewhere between one to six years to receive an accurate diagnosis of Alzheimer’s. Subsequent studies by the Alzheimer’s Association have estimated that as many as 50% of people of all ages with the disease neverreceive a diagnosis.

Unfortunately, there is no easy blood test that can be used to detect the brain disease. Diagnoses are usually confirmed through a combination of neuropsychological exams, analyses of a patient’s family history and costly spinal taps, MRIs, PET and CAT scans to view plaques and tangles in the brain.

Meanwhile, because of this delay, younger people can have issues at work because of the symptoms.

“Families will come in to meet with me and I’ll say, ‘Are you still working?’ and they’ll say, ‘No, I got laid off,’ or, ‘I took an early retirement, because I wasn’t sure what was going on,’ and lo and behold they realized later they had Alzheimer’s,” said Melissa Grenier, manager of the New Hampshire Alzheimer’s Association.

Because of the time it takes to get an accurate diagnosis, patients with early dementia frequently are fired or move from job to job. Most patients displaying symptoms are not aware of it at the time.  As a result, it can be discouraging and frustrating.

If a person had a heart condition, they would be aware of the illness and would be able to work with their employer to ensure that they continued to have a job and health insurance coverage and/or disability insurance coverage.  However, if they are fired or stop working before receiving an Alzheimer’s diagnosis, they will lose the financial safety net. Treating a condition like Alzheimer’s costs hundreds of thousands of dollars.

The person with Alzheimer’s is usually the last to know that there are issues. Those patients who are aware of changes in behavior, can be reluctant to speak with their employer. They fear that they could lose their positions.

Families facing early-onset Alzheimer’s should speak with an elder lawyer. This is not an easy situation, and professional help will be needed.

Reference: Concord Monitor(April 8, 2018) “Stolen Memories: Problems with diagnosis of younger-onset Alzheimer’s”

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