With the prevalence of Alzheimer’s disease expected to impact 16 million individuals by 2050, younger generations will increasingly assume caregiving responsibilities. More than a third of today’s caregivers are employed full-time. As millennials take on informal caregiving responsibilities, public and workplace policies must consider financial assistance or other support (e.g., family leave or allocated time off). This report explores the economic impact of the shift to millennial caregivers and the higher rate of incidence of Alzheimer’s disease in minority groups. The report concludes with a discussion of strategies at the organizational-and system-level to support millennial caregivers.
Calls for Action
Define public policy in supporting family caregivers in providing care.
Address how universities can better support student caregivers.
Companies and employers take the lead in supporting working caregivers.
Caregiver supports begin in communities.
To view the white paper, click here.
To view the best practice, click here.
Chances are you know someone caring for a loved one who is sick or has a disability. This could be due to an illness such as Alzheimer’s, Parkinson’s, cancer, stroke, or a variety of other conditions. Some family members provide live-in care, others visit daily or weekly, and some oversee care from a distance, or care provided by hired aides or a nursing facility.
No matter how the caregiver performs his or her role, caregiving is a tough job, requiring resources that are often scarce: time, money, support, and assistance. The Centers for Disease Control and Prevention (CDC) states that more than 34 million unpaid caregivers provide care to someone age 18 and older who is ill or has a disability, and an estimated 21 percent of households in the USA are impacted by caregiving responsibilities.
Almost all of this work is unpaid, typically provided by family members and often performed around the clock with no breaks. Also, many caregivers juggle other responsibilities such as jobs, raising children, and managing their own households.
November is National Caregivers Appreciation Month, and a great time to reach out to those providing care and help lighten their load. In recognition of those who work tirelessly and selflessly to care for a loved one, below are 12 ways to offer assistance and let caregivers know that you care. These people need support and often that support does not cost much, if anything, and takes little time.
Ask if you can sit for them a little while so they can run errands, take a break, see the doctor, or attend church or a caregiver’s support group, whatever they need to do to take care of themselves.
Going to the grocery store? Call and ask if there is anything you can pick up for them.
If your employer allows, donate paid sick time, vacation days, or personal time to a coworker caring for a relative who is hospitalized or needs post-hospital care.
Volunteer to mow the lawn, weed the garden, rake the leaves, or shovel the snow.
Share the bounty, whether from your vegetable or your flower garden. Fresh produce and fresh flowers are cheerful.
If you have the skills and tools, offer to change the oil in their car and rotate the tires.
Again, if you have the skills and tools, offer a free haircut to the caregiver and/or their loved one.
Walk their dog.
Ask if they would like you to wash and clean out their car.
Volunteer to take out the trash and bring the barrels out to the curb on trash day.
Double cook a meal, preferably one of their favorites, and send over a dinner.
Include them in your prayers.
For more information about caregiving and caregivers, please follow #AlzAuthors on Twitter during National Caregivers Appreciation Month in November 2015, or find AlzAuthors on Facebook.
Marianne Sciucco is not a nurse who writes but a writer who happens to be a nurse. A lover of words and books, she dreamed of becoming an author when she grew up, but became a nurse to avoid poverty. She later brought her two passions together and writes about the intricate lives of people struggling with health and family issues. Her debut novel, Blue Hydrangeas, an Alzheimer’s love story, is a Kindle bestseller, BookWorks featured book, IndieReader Approved, and winner of IndieReCon’s 2014 Best Indie Novel Award. A native Bostonian, Marianne lives in New York’s Hudson Valley and when not writing, works as a campus nurse at a community college. She can be reached via her website, Facebook, and Twitter.
In 2004, my father was diagnosed with Parkinson’s-related dementia and a few months later, my mother with Alzheimer’s disease. That was the year I became a caregiver. While my parents did not reside with me, I was still intimately involved in their daily care for the next 4 and 5 years. Traveling down that rabbit hole of dementia with my parents was difficult and sad. I watched helplessly as this disease steadily and ruthlessly chipped away at their brains, one memory at a time. That said, it was also a time of considerable personal growth for me. I learned to parent my parents with patience and compassion, caring for them much as they had cared for me as a child so many years before. Interspersed with the challenges were times of fleeting lucidity as well as moments of poignant tenderness, which I still remember and cherish, even today. These are moments I would have missed forever, had I not been a family caregiver.
According to the Alzheimer’s Association’s 2015 Facts and Figures, 85 percent of unpaid caregiving help for older adults in the USA is provided by family members. Women make up two thirds of that number, and over half of women caring for people with dementia are taking care of parents.
How many people actually plan on being an unpaid caregiver? Whether it is a spouse, parent or well-loved aunt, it is unlikely that most of us will ever anticipate the reality of wearing the label “caregiver.” As the boomer population continues to age, the number of unsung heroes caring for a family member is on the upswing. According to the report, *Caregiving in the U.S. 2015, there is currently an estimated 34.2 million American adults caring for a loved one 50 years or older.
Caregiving can be overwhelming, both emotionally and physically, bringing with it a myriad of emotions, all of which I experienced at one time or another, including frustration, helplessness, anger, sadness, depression, and guilt. The experience can also be lonely. At times I remember feeling like I was on a deserted island, with nary a person who really understood what it was like.
While speaking at a caregivers meeting recently, two women approached me afterwards to share their stories. One woman told me that her spouse with Alzheimer’s is slowly becoming more than she can handle, but her children are insisting that she keep him at home. The other woman suspects that her elderly father who lives next door to her is showing signs of dementia, but he flatly refuses to go to the doctor. They were both searching for answers. Like growing old, caregiving is not for sissies.
I sensed in these two women what experts label caregiver burnout, a very real phenomenon and the number one reason why it is imperative for all caregivers to recognize the importance of self-care.
If you or someone you know is experiencing the below symptoms, I encourage you to please make time to see a doctor.
More susceptible to illness
*Caregiving in the U.S. 2015 – A Focused Look at Caregivers of Adults Age 50+ was published by the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute.
Over the past several months, four other authors from across the country and I have crossed paths, all of us affected in some way by Alzheimer’s disease/dementia. Two watched both their parents’ memories disappear and one is a nurse who was a caregiver for those affected. Another is a granddaughter that was forgotten by her beloved grandpa, and the other is experiencing the disease himself.
For the month of November, the 5 of us have joined together together in recognition of both National Caregiver Appreciation Month and National Alzheimer’s Disease Awareness Month to acknowledge those family caregivers who are unsung heroes. From each other, we learned that all of us felt compelled to write our books, eager to make a difference…hoping that we might make the pathway for others traveling this road a little less painful and lonely.
Check out this commentary for more information on these great books!
Vicki Tapia, long-time lactation consultant and published author of numerous lactation articles, found her energies redirected to the other end of life when both her parents were diagnosed with dementia in 2004. Her diary documenting their journey resulted in the publication of Somebody Stole My Iron: A Family Memoir of Dementia, a 2015 finalist for the High Plains Book Awards. The mother of three grown children and eight grandchildren, Vicki lives with her husband and Mini Schnauzer in South Central Montana.
The McMaster Health Forum, with support from the Labarge Optimal Aging Initiative, recently hosted a public talk to examine the latest research and evidence into risks, prevention and treatment of Alzheimer’s disease. This talk featured presentations by Jay Ingram, one of Canada’s best-known and most popular science personalities, and Dr. Christopher Patterson, an expert on the diagnosis and treatment of dementia.
“My experience is that when you talk to people about Alzheimer’s, they have three questions,” said Ingram. “The first one is always ‘am I going to get it?’ The second is ‘If it looks like I’m likely to get it, what can I do to lower that risk?’ And the third question is ‘if that doesn’t work and I do get it, what are the prospects?’”
Will I get Alzheimer’s?
Early-onset familial Alzheimer’s
“There are two kinds of Alzheimer’s disease – early onset familial Alzheimer’s, which you inherit and is a dominant gene. If you had a parent with this kind of Alzheimer’s, you have a 50/50 chance of getting it yourself,” said Ingram.
But, he cautioned, “That’s so not the norm. There’s really only three genes that have been absolutely identified as early onset familial genes. They represent something less than 1% of all Alzheimer’s.”
Also, not every case of early-onset Alzheimer’s is genetic.
“Yes, there’s a risk but it’s a very tiny risk. For the most part, I think you could set that aside,” said Ingram.
“There’s really only one gene that has been unambiguously associated with late-onset Alzheimer’s (that is 65-70 years old and older),” said Ingram. “It comes in three varieties. One is bad, one is neutral and one is actually beneficial.”
“Let’s say, worst case scenario, I’m carrying two copies of the bad gene called APOE4. The most pessimistic of studies would say that that my risk is now 15-fold greater than it would have been. So you might think I’m terrified, but there are some other facts to consider. About half of the people who have the two bad genes never get Alzheimer’s. Plus, a good percentage doesn’t have those genes and do get it.”
“As far as late-onset, it’s so ambiguous for my money, it’s not worth worrying about.”
What can I do to prevent Alzheimer’s?
“There’s this whole constellation of effects, but when you put them together, I think they boil down to some pretty commonsense things,” said Ingram. “Exercise, watch your weight, watch your blood pressure, engage socially and keep your mind active. These are all sort of commonsense things that one should do in life.”
“Education has been shown to be clearly related to your risk of dementia. The further you go in school, the less likely you are to become demented,” said Ingram. “If you continue on in what is defined as a mentally stimulating job, you’re also better off.”
The single most important thing that older adults can do to prevent dementia is to walk 35 or 40 minutes a day.
“Exercise. Why is that important? Cardiovascular health, the health of your circulatory system and, maybe most importantly, your blood pressure are all risk factors, if they’re in decline, for Alzheimer’s disease,” said Ingram.
“There have been studies that show that it’s not even the kind of activities you do, its the number of them that you engage in and the number of people with whom you engage,” said Ingram.
There is good epidemiological evidence that people who adhere to a Mediterranean-type diet are least likely to develop Alzheimer’s.
People who watch a lot of TV are more likely to become demented.
Obesity and diabetes are risk factors for Alzheimer’s
Does having diabetes increase the risk for Alzheimer’s disease?
“If you have diabetes, your risk of developing dementia is about twice that compared to if you don’t have diabetes. Certainly, management of blood sugar is important. Whether that actually changes the progression of the disease, I don’t think we know but we would suspect that it would because appropriate management delays other vascular complications,” said Dr. Patterson.
Can cognitive exercises help improve brain function?
“The evidence for enhancing your memory by doing those memory exercises is not nearly as solid as the evidence for physical activity,” said Ingram.
“The evidence is that, in earlier stages of cognitive impairment, you see improvements in those domains in which you practice. If you do memory tests, it may not necessarily improve executive function,” said Dr. Patterson.
How does dementia impact the quality of life for caregivers?
Dr. Patterson commented that in a research project, in which he was involved, quality of life did not diminish in individuals over different stages of the disease whereas for caregivers it clearly did.
“While we talk about memory loss so much , the most disturbing change to families is not the memory loss but the change of mood or affect or personality. That’s where people feel they’ve lost the person,” added Ingram.
If I do get Alzheimer’s, what can I do about it?
“Understanding the disease and what’s going to happen to that person overtime is extremely important,” said Dr. Patterson. “Also, learning how to deal with some of the behaviors that may evolve as the disease progresses is by far the most important part of management of individuals with dementia.”
Dr. Patterson highlighted that it is important to recognize “that being a caregiver for an individual with dementia is extremely stressful.”
Case management is a way of supporting families through this journey.
“Of the whole management of individuals with dementia, medications really play the least part.”
“The single medication that is commonly prescribed these days, will stabilize cognition for 9-12 months,” said Ingram. “As the cells generating neurotransmitters die, to a degree, you can replace them chemically. But, the cells are still dying and eventually you can’t make it up chemically.”
Patients may be prescribed medications to help with other symptoms of the disease.
“In the future, there may be medications that can literally interrupt the sequence of the disease,” said Dr. Patterson.
“So what do we do in the meantime? We can do lots of things that make us healthier and happier people. We hope that with increasing general health, reduction of diabetes, and daily exercise slow down the obesity train. That may be, at least in the short-term, the most effective thing we can do,” said Ingram.
The rest of the summary is available here and the video below presents highlights from the event.
Steven Lott is the Senior Lead, Communications for the McMaster Health Forum. He leads the Forum’s communications initiatives including the dissemination of Forum products and information, coordination of public talks, social media engagement, media relations, and website management. Steven has worked with a variety of patient advocates, non-governmental organizations, think tanks, academics and other health system stakeholders in Canada, USA, South America, Europe and Africa to promote strategic health policies.
Precious, a woman who looks well beyond her sixty-six years of age, sits in her yard in rural Zimbabwe watching over her three grandchildren, ages four, six and seven. “Gogo, gogo!” the youngest one beckons his grandmother, as he chases after his older siblings who are in search of guava fruits. Precious’ son, Michael, left for South Africa for work shortly after he married Mary, a girl from the same village. Michael contracted HIV in South Africa and transmitted it to Mary during one of his visits back home. While Michael was able to access antiretroviral drugs and continues to generate a small livelihood – a portion of which he sends from South Africa to Zimbabwe every few months – Mary died from AIDS shortly after the birth of her third child. Michael and Mary’s three children are now under the full-time care of Precious. 
Precious’ story is similar to those of many other grandmothers in Sub-Saharan Africa. The fact that Zimbabwe, Malawi, Kenya and other parts of the region are suffering from an Orphan Crisis is a topic of much debate internationally. The new systems of care that transnational economic structures are creating, and the pressing problem of HIV/ AIDS, continues to garner growing attention. For example, 2007 saw the first United Nations-led Global Summit on Grandparents and Kinship Caregivers. Sub-Saharan Africa currently has 17.9 million orphans, a large number of whom are being brought up by elderly grandparents.
A study conducted among the Luo ethnic group in Kenya demonstrates that older caregivers face severe strain while taking on parental roles in the lives of their grandchildren. For instance, grandmothers have noted going hungry on a regular basis to help feed the 1-9 orphans they care for. Many cannot sleep through the night as they have to nurse young infants. There is also the perpetually looming stress of being unable to provide financially for the children. This is especially hard when the children are HIV positive and require medical attention.
Another study in rural Uganda shows that caring for young children creates both physical and mental stressors, negatively impacting older caregivers’ health. The inability to participate in a livelihood livelihood generating activity causes grandparents to borrow from other households, which stigmatizes them in the societies they live in. In addition, children in the care of elderly are more likely to be victims of abuse as the elderly are often unable to protect them from these negative influences. All these factors culminate in weight loss, poor health and depression among the aging.
The preferred method of care for orphans in Sub-Saharan Africa is community-based as opposed to institutional. Keeping the child in a familial environment, and the village or tribe they come from, is key. While this method is certainly ideal, given the strain it places on the bulk of caregivers – grandmothers – there needs to be stronger social nets, such as feeding programs and free education, in place to help both caregivers and orphans live relatively successful lives. While certain NGOs provide stipends for food and education to such families, they do not have nearly enough capacity to address the issue of caregiver strain at the pace at which it is growing. It is important, thus, to consider the larger picture and understand how globalization and national policy can mitigate rather than exacerbate the issues that older caregivers face.
 This particular story is fictional. It is based on the lives of many women living in the rural Zimbabwe.
Sachi Shah is a recent graduate with a degree in International Development and Economics from Sarah Lawrence College, New York. She currently works as a grassroots campaign organizer, and is actively seeking opportunities in the international public health sector.
Unfortunately, it is impossible to create a standardized time frame regarding end-of-life or long-term care since it varies case by case. While there are signs and symptoms that allow people to predict the direction that someone’s health is going, many individuals begin long term care after a sudden life change that leaves them unable to care for themselves at home. One day, they could be healthy and the next, there could be a stroke or fall. In the best-case scenario for a situation like a stroke or fall, patients return home after successful rehabilitation, but more often than not, patients are unable to fully recover. When this happens, depending upon the severity of the person’s impairment, they are either taken care of by family members or moved into an institutional setting.
About 80 percent of seniors receiving long-term care remain within a private home (either their own or a family member’s), and the remaining 20% are moved into facilities. Each situation has pros and cons and what is best for one individual may not be the right choice for another. Those who remain within their homes are often eligible for home-health services to aid family members in their responsibilities. According to the AARP Public Policy Institute, the elderly population in nursing homes has declined over the past ten years with more people receiving care at home, living in assisted living, or being taken care of in group homes. Nursing homes are generally preferred if a person needs 24-hour supervision.
Long-term care, a general term, refers to the type of assistance provided for people with cognitive or physical limitations. Caregivers provide patients with the care needed to complete daily activities. If patients are unable to remain at home, facilities continue rehabilitation to try and strengthen patients and improve their quality of life. Not only does a more functional patient ease the burden of the caregiver, but the more a resident can do by him or herself (eating, using the bathroom, bathing, and changing), the happier they generally are. As age and illness advance, it is important to not have unrealistic expectations since people start to naturally decline.
Typically, long term care is not paid for by insurance companies so cost is definitely a factor when deciding what is best for your loved one. Even with 80 percent of elders receiving care through informal caretakers such as family members, there is still monetary value attributed to this “donated” care. The time spent caring for a loved one could be spent employed elsewhere with wages. There are also transportation costs to think about since an informal caregiver performs duties otherwise performed by paid healthcare aides. It is therefore important to reach out to a social worker as there are benefits that caregivers may not be aware of in their home state. Some states provide a stipend to informal caregivers while other states grant special benefits. Planning ahead and purchasing long-term care insurance can be a good option for many families. Even without this type of insurance, many facilities, especially hospices, charge on a sliding scale. In some states, there is no fee at all beyond Medicaid coverage. See here for eligibility guidelines and a list of Medicaid rules in your home state.
From long-term care, people unavoidably move toward end-of-life or palliative care, and when a loved one makes the transition, it is not about giving up or hastening death. Rather, it is about making death as comfortable and painless as possible. Many people mistakenly believe that admission to a hospice facility is determined by a life expectancy of six months or less, but this is false. Palliative services exist to relieve emotional or physical pain and to manage symptoms.
Before getting to this stage in life, it is crucial to have a written and notarized document, declaring how your loved one would like the end of their life managed in case they become unable to make decisions for themselves. Without preference information available in one’s medical records, it becomes harder on families in a time when things are already hard enough. Thankfully, people live in a time when long-term care and end-of-life care have made one’s later years more comfortable.
Max Gottlieb is the content editor for the Arizona Long Term Care System (ALTCS) and Senior Planning in Phoenix, Arizona, USA. Senior planning is a free service that has helped many Arizona seniors and their families navigate the process of long term care planning. ALTCS and Senior Planning find and arrange care services as well as help people apply for state and federal benefits.
The HIV virus is known to affect men and women in their reproductive age, between 15-49 years, leaving behind a large dependent population – children, the elderly, etc. The elderly play an important role in the epidemic although they are the invisible victims of this epidemic. They may not necessarily be infected with HIV, but are certainly affected by it.
The various roles of the elderly in the HIV pandemic include care-giving to the infected children, co-residence with the infected, providing financial and material support, fostering grandchildren, experiencing the suffering and ultimate loss of a child, and facing negative community reactions. HIV can place a huge physical, emotional and financial burden on the elderly population of a country.
Caregiving to a HIV+ adult child places a significant burden on the elderly. They lose the material, financial and emotional support from children that they are counting on. In Thailand, a study reported that over 50% elderly HIV caregivers experience fatigue, insomnia and anxiety. However, this information is before the provision of antiretroviral therapy (ART) in Thailand. With the improved access to ART, HIV is increasingly looking like a chronic disease. The lifespan of HIV/AIDS patients is increasing, and those under ART can lead a ‘normal’ life. HIV/AIDS is no longer the death sentence it used to be. Consequentially, the use of ART greatly reduces the responsibilities placed on the shoulders of the elderly population.
A big advantage of ART for the elderly is economic stability. Parents of HIV/AIDS children need no longer use their limited resources on the health of their children. Additionally, they can continue to rely on their adult children with HIV+ for financial support since ART can allow those children to lead a closer to ‘normal’ life. Parents’ psychological well-being has also improved due to fewer worries about the health of their children with HIV/AIDS. Thailand incorporated older people affected by HIV/AIDS as a target group in their 10th National AIDS Plan (2007-2011) for the first time. This not only demonstrates a sensitized understanding of the victims who are infected and affected of HIV/AIDS, but also marks a significant step forward in understanding and providing holistic care for the elderly population in Thailand.
Similar models of HIV care, with the elderly looking after the HIV/AIDS adult children, have been reported in countries including Cambodia and Tanzania. Even with the increasing use of ART, the elderly may play a role, albeit a modified one, in HIV care. There is a strong need for updated and comprehensive data to shed light on the issue to better inform current public health and HIV/AIDS campaigns.
Namratha Rao is currently pursuing her MSPH in International Health in Social and Behavioral Interventions at the Johns Hopkins University Bloomberg School of Public Health.