Ways To Help Someone With Alzheimer's Disease

Ways To Help Someone With Alzheimer's Disease – Medically Reviewed by William T. Hu – Brandi Koskie and Whitney Akers – Updated September 21, 2018

Alzheimer’s disease is the most common cause of dementia. It progressively affects a person’s memory, judgment, language, and independence. Alzheimer’s, once a hidden burden for a family, is becoming a major public health problem. Its numbers have increased and will continue to increase at an alarming rate as millions more Americans develop the disease as they age and a cure is out of reach.

Ways To Help Someone With Alzheimer's Disease

People living around the world with Alzheimer’s. It is expected to grow by 116% in high-income countries between 2015 and 2050, and to increase to 264% during the same period in low- and middle-income countries.

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Alzheimer’s is the most costly disease in the United States. Its gross annual cost is more than $270 billion, but the cost to patients and caregivers is incalculable. One of the main reasons Alzheimer’s does not cost more is because of the 16.1 million unpaid caregivers who have cared for their loved ones’ illness. This selfless effort saves the nation more than $232 billion a year.

One in 10 Americans age 65 and older lives with Alzheimer’s disease or a related dementia. Two thirds of those affected are women. This is the average life expectancy of a person with Alzheimer’s

. However, depending on several factors, this can last up to 20 years. As the disease progresses, each day creates more challenges, expenses and stress for caregivers. These primary or secondary caregivers often take on that role for reasons ranging from duty to cost.

To better understand caregivers, how Alzheimer’s has affected their lives, and promising future developments that may change the Alzheimer’s landscape. We surveyed nearly 400 active caregivers representing Millennials, Generation X, and Baby Boomers. We interviewed a dynamic group of medical and caregiving experts to better understand the limitations, needs, and untold truths of living and caring for someone with Alzheimer’s disease.

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The overwhelming truth about Alzheimer’s is that most of the care is in the hands of women. Whether they see it as a privilege, a burden, or a necessity, two-thirds of unpaid primary caregivers of people with Alzheimer’s are women. More than a third of these women are the daughters of their caregivers. Among Millennials, granddaughters are more likely to take on the role of caregiver. In general, caregivers are the spouses and adult children of caregivers rather than any other relationship.

“It’s like society expects women to be caregivers,” says Diane Tyk, project director for the Global Social Enterprise Initiative and AgingWell Hub at Georgetown University’s McDonough School of Business. She noted that because many women previously assumed the role of primary caregiver for their children, they believe that their siblings or other family members will often take the lead in Alzheimer’s care.

This does not mean that men are not involved. Professional caregivers are quick to point out that they see many children and husbands taking on the job, too.

In general, most caregivers sacrifice their health, finances, and family dynamics for the sake of their loved ones. Nearly three-quarters of caregivers report that their health has worsened since taking on caregiving responsibilities, and one-third have to miss medical appointments to manage care for their loved ones. Generation X caregivers experience the greatest negative health outcomes. However, in general, caregivers are a stressed group: 60 percent suffer from anxiety or depression. Imagine the difficulty of caring so fully for another person, when your own mind and body desperately need care.

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If there’s a silver lining, the intimate view of a loved one aging with Alzheimer’s prompts more caregivers (34 percent) to test for biomarkers of the disease sooner, something millennials are more proactive about than older generations. Given the impact of the disease, they are willing to take measures to prevent or delay the disease. Experts encourage this behavior because it can have a significant impact on the onset and progression of Alzheimer’s.

In fact, new studies suggest a change in established general diagnostic criteria to focus on identifying and treating the previous impact of the disease, allowing for better understanding and treatment. In other words, rather than diagnosing Alzheimer’s at a stage when dementia is evident, future work can focus on change in the brain without Alzheimer’s symptoms. While these advances are promising, the approach is research-only at this time, but could have a big impact if adapted to mainstream treatment as a preventative measure. This allows researchers and doctors to see changes in the brain related to Alzheimer’s disease 15 to 20 years before the disease is diagnosed today. This is important because early detection of changes can help identify and guide points of early intervention.

For every impact caregivers feel on their health, there is an equivalent financial impact. One in two caregivers report that their finances or career have been negatively affected by their responsibilities, reducing current funds and limiting retirement contributions.

“I’ve spoken to family members who were making decisions that seriously jeopardized their future financial independence to be able to do what the family was asking of them in terms of care today,” said Ruth Drew, director of information and support services. Alzheimer’s Society.

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The vast majority of caregivers are married, have children living at home, and have full- or part-time jobs. It should not be assumed that caregivers were naturally available because nothing else was happening. On the contrary, it is the people whose entire life occupies one of the greatest feats. They often do so with grace, bravery, and great support.

In addition to the majority of home care, these individuals make key decisions about initiating medical evaluations and the financial, medical, legal, and overall well-being of caregivers. This includes asking that 75 percent of people with dementia stay at home, either in the patient’s home or their caregiver’s home.

The day a caregiver begins to notice warning signs in a loved one’s behavior and speech, her life changes and an uncertain future emerges. Nor is it a transition to the “new normal.” At any given time with someone with Alzheimer’s, it is not clear what will happen or what they will need next. Caregiving involves great emotional, financial, and physical challenges, especially as the person with Alzheimer’s disease progresses.

Caring for someone with Alzheimer’s is a full-time job. Among family caregivers, 57 percent provide care for at least four years and 63 percent anticipate this responsibility for the next five years, all with an illness that can last up to 20 years. So who bears that burden?

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There are 16.1 million unpaid caregivers in the United States. Across generations, adult children are the most common primary caregivers. This is especially true among Generation X and baby boomers. However, among baby boomers, 26 percent of primary caregivers are spouses of people with Alzheimer’s, and millennial grandchildren serve as primary caregivers 39 percent of the time.

Collectively, these caregivers provide more than 18 billion unpaid hours each year. This care is valued at $232 billion in relief for the nation. That’s an average of 36 hours per week for each caregiver, creating a second full-time job with no pay, benefits or generally paid time off.

This role includes almost everything the patient needs in their daily life (less at the beginning, as both the patient and caregiver can perform daily tasks normally) and gradually evolves into a full-time care position in the late stages of Alzheimer’s. A short list of tasks performed by a primary caregiver includes:

Life doesn’t stop for these caregivers until they can return to where they left off. Other aspects of their lives speed up and they try to carry on as if nothing has changed. Alzheimer’s caregivers are typically married, have children living at home, and have a full- or part-time job outside of the care they provide.

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A quarter of caregivers are part of the “sandwich generation,” meaning they raise their children while caring for their parents.

Diane Ty says the “club-sandwich generation” is a more apt description because it also includes their work obligations. On a positive note, according to one study, 63 percent of these women said they felt stronger thanks to this dual-skilled role.

“We know that in the sandwich generation there are many women in their 40s and 50s who are balancing their careers, caring for an elderly parent or relative, and caring for young children at home or paying for college. It takes a huge toll on them,” says Drew.

Taking on this primary caring role is not always an option as it should be. Sometimes accepting that role is a must, as Diane Ty describes it. For other families, it’s a question of affordability.

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