Who Will Care for the Caretakers?

Many of us are caring for–or know someone who is caring for–a family member, often an aging parent. With 10,000 baby boomers turning 70 every day, caring for this demographic is a growing health care matter, and it’s only time before it becomes a political issue. Let’s take a look at three women and the impact this has had on their lives.

• Aisha Adkins graduated from college with goals, dreams and a bright future. Ten years later, she’s still living at home. No job or car, no savings or the advanced degree she needs to be competitive in her field. Her mother was diagnosed with early onset dementia and cannot be left alone. For the last decade, Aisha has held the demanding role of caretaker for her mother. Aisha takes care of the house, shops and cooks dinner, then retires to her room around 10pm, when her father gets home. She’s had three dates in three years; she’s completely missing those exciting post-college years when young adults really start to find themselves.
• Heather Oglesby is a project officer for the Centers for Disease Control and Prevention in Atlanta.She was 42 when her mother received a dementia diagnosis four years ago. Caring for her mother has stunted her career prospects and weighed on her marriage. She has taken money from her pension plan and refinanced her home to cover her mother’s expenses. “Caregivers are physically, mentally and financially dying,” she told me. “They are a health care crisis in the making.”
• Heather Boldon dropped her demanding paralegal job nine years ago to take care of her mother. Since then, she has moved in and out of lesser-paying jobs, unable to build financial security. “I’m almost 52, and I’m starting from scratch,” said Ms. Boldon, whose mother has Alzheimer’s disease. “I’ve lost ten years of my life. What’s going to happen to me?”

Aisha and her father understand that her mother will need full-time professional care at some point. But they have no idea how they will pay for it. The Adkinses’ situation may be extreme, stemming from an early onset dementia diagnosis. But even for caregivers who keep a foothold in the labor force, the economic cost can be substantial.

The burden of care is profoundly reshaping lives

Unfortunately, stories about these three women aren’t uncommon. This burden of care is reshaping the lives of millions of Americans. About 15% women and 13% of men 25-54 years old spend time caring for an older relative, according to the Labor Department. For those 55 to 64, the share rises to one in five Americans. Some 20% of these caregivers also have children at home.

Demand for care is growing: Blame it on the boomers

“The boomer generation is living longer than when the safety net was put in place,” said Ai-jen Poo, a co-director of Caring Across Generations, a coalition of advocacy groups. Her organization is pushing to add a benefit to cover care — for older adults, children and sick family members — to the nation’s safety net, alongside Social Security and Medicare.

While men are being forced to step up, Ms. Poo noted that “women, in particular, are bearing the brunt of the burden.” By knocking many women in their prime earning years from the work force, the growing strain from care is weighing down the American economy.

For many, leaving the labor force is not an option

More than 60% of the people caring for an older person work, too; 45% of the caregivers work fulltime. Altogether, American families forgo at least $28.9 billion per year in wages when they take time off to take care of their children or sick relatives, according to a study issued in 2016 by the liberal Center for American Progress.

Burden of care only starting to seep into political conversations

The burden of care has not become a political concern with the urgency of health care policy; it is mostly absent from proposals by candidates for the Democratic presidential nomination. But it is seeping into the conversation. Senator Bernie Sanders’s Medicare for All proposal includes a benefit for long-term care. Senator Elizabeth Warren supports universal child care, which she has proposed to finance with a wealth tax. In 2016, Hillary Clinton made this part of her platform, by giving tax credits to those who were taking care of family members.

Ms. Poo argues that it is only a matter of time before care becomes a political priority. “There is no feasible way in this economy that people can manage care without more institutional support,” she said. It most likely will become a political issue and it will end up being a women’s issue.

Many of our clients are seniors who come in to our offices to create their Living Trusts

The result is numerous conversations on a wide range of topics related to health, healthcare and end-of-life planning. California Document Preparers assists our clients in the preparation of their Trusts, which include a Power of Attorney and Advance Healthcare Directive. Most are surprised at how easy it is. Schedule your appointment today by contacting us at one of our three Bay Area offices. Our dedicated team is helpful, compassionate and affordable.

A Brain Scan May Predict Alzheimer’s. Should You Get One?

Juli Engel was delighted when a neurologist recommended a PET scan to determine whether amyloid — the protein clumps associated with an increased risk of Alzheimer’s disease — was accumulating in her mother’s brain.

Her mother, Sue Engel, is 83 and lives in a retirement community in Florida. She’s been experiencing memory problems and the other signs of cognitive decline that her family could no longer ignore. There were, of course, the small things that drive us all crazy–losing our keys and wandering into rooms, then forgetting why we’re there. But for Juli, there were more serious indicators: Mom had been financially exploited, suffered an insurance scam and caused an auto accident. Time for an intervention.

PET scans can detect amyloid plaques that can indicate Alzheimer’s

PET scans can detect the amyloid plaques that occur commonly in older people’s brains that contribute to Alzheimer’s disease. Receiving an early diagnosis can be devastating to patients and their families, but it can help patients get their affairs in order and make the most of the time they have left. They can begin taking medications that may slow down the spread of the disease. Alzheimer’s can be a slow-moving illness, and early diagnosis gives patients time to join support groups, spend time with their families and learn how to live as fully as possible in their remaining years.

A PET scan’s downside

Amyloid plaques occur commonly in older people’s brains, but not everyone with amyloid will develop dementia. Nor does a negative PET scan mean someone won’t develop dementia. Medicare doesn’t cover the scans’ substantial costs of $5,000-$7,000.

The healthcare community debates PET scans: Few benefits at significant costs

• Brain damage from Alzheimer’sbegins years before people develop symptoms, and worried patients and their families may start turning to PET scans to learn if they have this biomarker.
• While scientists at Washington University in St. Louis have developed a blood test for amyloid that can predict the development of plaques in the brain, it is years away from everyday use in doctors’ offices.
• Some experts fear PET scans offer few benefits, at substantial costs. Currently the criteria developed by the Alzheimer’s Association and nuclear medicine experts call for PET scans only in cases of unexplained or unusual symptoms and unclear diagnoses.

Even with detection, we have no corresponding treatment for Alzheimer’s

Alzheimer’s rates climb steeply at older ages, when people grow more likely to die of other causes before they can develop symptoms. But older people also may be among the 30% or so of those with amyloid deposits who, for unexplained reasons, retain normal cognition. “If we start treating everyone with preclinical Alzheimer’s, what treatments would those be? Multiple trials have failed to find drugs that prevent, reverse or substantially slow Alzheimer’s disease, perhaps because these treatments were introduced too late in the disease’s course.

Concerns about broader acceptance

Some worry about “indication creep,” when a drug or test approved for patients with a particular condition becomes used for others. They also worry about crushing costs for Medicare. “Even if a scan cost zero dollars, I wouldn’t recommend it,” said Dr. Ken Covinsky, a geriatrician at the University of California, San Francisco. “Do you really want to know that you have amyloid in your brain, years ahead of cognitive problems that may never develop?”

PET scans can act as motivators

Proponents of making PET scans more widely available argue that knowing their amyloid status may motivate patients to make lifestyle changes. Stopping smoking, exercising and eating a healthier diet are all found to reduce dementia, even among those at higher genetic risk. Perhaps, too, patients will be more likely to begin advance care planning.

What the scan will mean for Juli Engel

For the Engels, the test delivers tangible results. Once the neurologist documents her mother’s incapacity, Juli can take steps to prevent her mother from driving; she’ll be able to move her into assisted living when needed. As a geriatric care manager, Juli thoroughly understands the trajectory of this disease. Because she also knows that both her maternal grandparents had Alzheimer’s, she is considering her own future, too. Does she have amyloid in her brain? Her family is full of scientists, and we tend to want to know these things,” she said.

Many of our clients are seniors who come in to our offices to create their Living Trusts

The result is numerous conversations on a wide range of topics related to health, healthcare and end-of-life planning. California Document Preparers assists our clients in the preparation of their Trusts, which include a Power of Attorneyand Advance Healthcare Directive. Most are surprised at how easy it is. Schedule an appointment today by contacting us at one of our three Bay Area offices. Our dedicated team is helpful, compassionate and affordable.

Living–and Thriving–with Alzheimer’s

Laurie Scherrer, 55, a hardworking sales executive, found herself forgetting customers and unable to perform simple math calculations. She was diagnosed with early onset Alzheimer’s disease and frontotemporal dementia, which causes deterioration in behavior and ability to understand language.

Ms. Scherrer gave herself some time to feel sorry for herself, then took action. Knowing that her life now had limits, time became more precious. “I began to appreciate the joy and beauty around me,” she said. Ms. Scherrer knew that she still had plenty of time to live–and thrive–with Alzheimer’s.

Creating a team of professionals became an immediate priority

Creating a Living Trust, naming a Power of Attorney and an agent for her Advance Healthcare Directive were important priorities. She knew she would need these as her disease progressed. Her doctor and financial planner were important members of her team, along with her husband and children.

As part of her planning, Ms. Scherrer  began to research dementia. She found a group called Dementia Mentors, and joined the group’s virtual memory café. The format: Nine or so people, each in a box on a screen, shared strategies to ease symptoms, medication tips and learn from each other. She learned to avoid those things that caused confusion, to celebrate her achievements and to savor the good things in her life.

Those with Alzheimer’s can still lead fulfilling lives and plan for the future

Ms. Scherrer has gotten involved in the Alzheimer’s community. As a member of the advisory board of the Dementia Action Alliance, she speaks at conferences of policymakers and neurologists. She contributes suggestions for better, more sensitive, care. Her advocacy could help other baby boomers who are reaching the age when the risk for dementia rises. The number of people with Alzheimer’s who are 65 or older is projected to climb to 7.1 million in 2025 and 13.8 million in 2050, up from 5.5 million today, according to the Alzheimer’s Association.

Among challenges for families: Assessing ability to understand and sign legal documents

A challenging question for families is whether the person with dementia can understand and sign legal documents. Even mildly impaired persons may need to be carefully evaluated.

An Advance Healthcare Directive provides guidance on end-of-life treatment. A person with dementia may live for a long time after a diagnosis, and instructions could include details for caregivers, and how and where patients choose to spend their final days. Ms. Scherrer has directed her Agents to withhold treatment, under certain circumstances, for serious illnesses like cancer.

The economics of long-term care

Evaluating assets to pay for long-term care also becomes a priority. Patients go through different levels of care, and there are different costs associated with each level. Medicaid, which is financed by state and federal governments, pays for care for people with limited assets, though state laws differ. The Scherrers expect to sell their four-bedroom house, which they no longer need. A smaller place would be easier to manage and free up cash for long-term care. Ms. Scherrer  has looked at assisted living facilities, though members of her family have promised to care for her at home for as long as possible.

Another challenge: Dealing with the loneliness of Alzheimer’s

People with dementia stress the importance of developing social connections. Communicating with others who still engage in hobbies, sports and other activities keeps patients from feeling isolated. Many chapters of the Alzheimer’s Association offer early-stage support groups where individuals and caregivers can socialize.

Ms. Scherrer  has created and signed her legal documents and made financial plans

The article about Ms. Scherrer, by Susan B. Garland in The New York Times, provides an insight into how life-altering a dementia diagnosis can be—especially at the age of 55. Yet dementia can be a slow-moving disease, and Ms. Scherrer  knows she’s lucky to be surrounded by a supportive family. She’s making the most of the time she has left and knows that each day is a blessing.

For those who are diagnosed with dementia, getting a Power of Attorney and Advance Healthcare Directive while they still have testamentary capacity is critical for their long-term care. Schedule an appointment to get started on your Trust today by contacting us at one of our three Bay Area offices. Our dedicated team is helpful, compassionate and affordable.

Early Dementia Detection Helps Seniors Manage the Disease

In 2016 The New York Times devoted a special section to Alzheimer’s. It was a beautifully written story, Fraying at the Edges, by N.R. Kleinfield, that focused on Geri Taylor’s heroic journey with the disease. Ms. Taylor had become forgetful; mundane tasks often confused her. One day she got off the subway and had no idea why she was there. She tried to pass off increasingly frequent memory problems as inevitable infirmities of old age. But the day she looked in the mirror and didn’t recognize the face staring back at her was her come-to-Jesus moment. She knew she could no longer ignore what was happening to her mind.

Diagnosis: Mild cognitive impairment, a precursor to Alzheimer’s disease

Her doctor put her on Aricept, a drug designed to improve cognitive performance, and it seemed to sharpen her thinking. But as her doctor told her, she wasn’t just losing her memory, she was losing “executive function”— forgetting the sequence of steps in the processes of all the little things we do, the things we take for granted.

It’s important to get help sooner for people whose minds are slipping

Patients showing signs of mental decline or dementia should be getting checked during routine medical visits. Dementia is an uncomfortable topic for patients and their families. It’s also a difficult topic for their doctors, but family physicians need to do a thorough evaluation and share the diagnosis.

Patients and family members should push for an evaluation if they’re worried that symptoms might not be normal aging. We all laugh about misplacing our keys. But there’s a difference between occasionally misplacing keys and putting them in the freezer. By the time you’ve gone from misplacing your keys to forgetting what those keys are for, you’re too far gone to participate in your own care. It’s not just memory that suffers, but judgment, and sometimes it can be years before dementia is diagnosed.

The growing need for early diagnosis

• About 50 million people worldwide have dementia; Alzheimer’s is the most common form of the disease. In the U.S., nearly 6 million people have Alzheimer’s and an estsimated 12 million have mild cognitive impairment, a frequent precursor.
• In 2015, Alzheimer’s Association research using Medicare records suggested that only about half of those being treated for Alzheimer’s had been told by their health-care providers that they had been diagnosed with the disease.
• Physicians often hear of symptoms or memory complaints from patients or their spouses and say, “you know, you seem okay to me today, so check back in six months”. The consequences? Patients may end up hospitalized because they forgot to take their medications.

Medicare has begun covering mental assessments

Medicare recently started covering mental assessments as part of annual wellness visits, but doctors aren’t required to do it and there is no guidance on how to do it. In some cases, it might be as cursory as asking “how’s your memory?”

The guidelines do not recommend screening everyone

The Medicare guidelines outline what health care workers should do if people describe worrisome symptoms. It includes checking for risk factors that may contribute to dementia or other brain diseases, including family history, heart disease and head injuries. There are pen-and-pencil memory tests and imaging tests to detect small strokes or brain injuries that could be causing memory problems.

Doctors are trained to heal, when there is no cure for Alzheimer’s

Dr. Michael Sitorius, family medicine chairman at the University of Nebraska Medical Center, said dealing with mental decline adds to the challenge of caring for frail elderly patients. It’s a tough diagnosis to make for many doctors, he said, because medical training focuses on “trying to cure people, and Alzheimer’s and dementia are not curable.”

Dr. Sitorius gives his older patients mental tests at their annual checkups, but sometimes patients or their loved ones don’t want to hear the results. In those cases, Sitorius still addresses related issues including depression, safeguarding medication, nutrition and whether patients should continue driving. The new guidelines are a welcome reminder for family doctors to tackle these issues earlier. “We strongly encourage a full disclosure,” including diagnosis, stage and prognosis, he said.

Meet Anne Hunt, 81, who once ran a busy Chicago cooking school

At her daughter’s urging, Anne Hunt visited her family doctor in 2011 because of increasing forgetfulness. The 81-year-old now recalls struggling with memory tests involving letters and numbers that her doctor had her perform. The test results were inconclusive and there was no diagnosis.

“We didn’t do much about it,” said Bruce Hunt, Anne’s husband, until five years later, when her behavior was clearly worsening – more memory lapses, repeating herself and forgetting where to put things. She was diagnosed with Alzheimer’s after an imaging test showed brain changes associated with the disease.

The benefits of early diagnosis

“There’s no pill they can take to make it go away, so some people think there’s no point to getting a diagnosis,” but that’s being short-sighted, the National Institute of Aging’s Silverberg said. “It really does offer an opportunity to plan.” Alzheimer’s medication such as Aricept and Namenda can ease symptoms. Other benefits include a chance to join experiments testing treatments, opportunities to resolve finances, find caregivers, make homes safer and use memory aids and calendars to promote independent living. The diagnosis energized the Hunts. They joined support groups and a singing ensemble, finding new things to help them cope.

For many, the biggest fear is the unknown. Dementia can be a slow-moving disease. Receiving a diagnosis helps many Alzheimer’s patients make the most of the time they have left.

A big part of end-of-life planning is creating a Living Trust. Make an appointment today by contacting us at one of our three Bay Area offices. Our dedicated team is helpful, compassionate and affordable.

Baby Boomers: Learning Lessons in Estate Planning from Their Parents

While many baby boomers have made alarmingly few plans for retirement, others are immersed in a kind of geriatric boot camp as they help their parents navigate their final years. One adviser recommends using your parents’ experience as a training manual: Healthcare considerations, life insurance, Living Trusts and funerals are the building blocks of end-of-life planning.

Learning the hard way: A Living Trust means that your family will avoid Probate

The long-term implications of not having a Living Trust are significant. Without a Trust, your estate will need to go through the expensive and time-consuming Probate process. Baby boomers who have been left to Probate their parents’ estates have vowed to leave their own children better prepared.

Something to think about: Prepaid funerals or burial expenses

While the estate can be used to pay for funeral expenses, you will need liquid assets to pay for funeral expenses. If a parent has been in hospice, nursing care or assisted living for the last few months of his/her life, there likely will be bills from a wide range of healthcare providers that will need to be paid.

It’s not unusual that assets are tied up in Probate or otherwise inaccessible. Not all baby boomers can front the money needed to pay for their parent’s burial expenses and the inevitable healthcare bills that trickle in. As part of long-term planning, many families set aside money or prepay for at least a portion of these inevitable expenses.

Planning for health complications

Many seniors look forward to their retirement as time to pursue second careers, volunteer, travel and enjoy their friends and families. Unfortunately, unexpected health issues and their related costs can completely derail plans for a blissful retirement.

Boomers learn from their parents that health care is an important part of retirement planning

• An estimated 70% of Americans can expect to use some form of long-term care at some time in their lives.
• Statistics for 2018 show that 5.7 million Americans are living with some form of dementia.
• More alarming, 200,000 people under the age 65 have early-onset Alzheimer’s. At this time, there is no treatment or cure for this insidious disease.

Escalating insurance costs

Today’s medical advances mean that we can make smarter decisions about our healthcare needs. We’re living longer, but depending on our health, that may not mean that we’re living better. If life or disability insurance is part of your plan, it’s important to know that rates increase as you get older. Many life insurance policies bundle long-term care into their plans. Researching family history for heart disease, diabetes, dementia, cancer or other hereditary illnesses may help you make informed healthcare decisions.

Learning from our parents: Plan for the worst and hope for the best

Don’t wait until there is a crisis; figure this out while you’re healthy and able to make thoughtful, informed decisions. Everyone who’s had to cope with the loss of a parent knows the importance of careful estate planning and the benefits to surviving family members. Baby boomers whose own parents have left them with a poorly planned estate are learning from this experience and leaving their own families better prepared.

There’s still time to create your Living Trust in 2018. Our comprehensive Living Trust package includes a Power of Attorney and Advanced Healthcare Directive. Contact us at one of our three Bay Area offices to schedule an appointment. Our dedicated team is helpful, compassionate and affordable.