When I first became a hospice social worker, I was stunned to realize more than half of my patients were diagnosed with advanced dementia. I had been under the assumption that I would be working with mostly people with cancer or other chronic illnesses such as Chronic Obstructive Pulmonary Disease (COPD) and Congestive Heart Failure (CHF). While many of my patients have suffered from those maladies in the latter category, the prevalence of dementia is rather high. After seven years as a social worker “in the trenches,” I would have to learn a whole new skill set if I was to survive and thrive in hospice.
Most of these patients eventually end up in nursing facilities as the burden of their care becomes too great for family members to keep them at home. In visiting such facilities, I have came to find that many more people than just those in hospice were in various stages of dementia. It is a fascinating phenomenon with several different causes, but I have developed my own way of working with these individuals based on their current level of capability to engage interpersonally. As a result, I have identify several areas of concern regarding the treatment elderly patients receive from care providers and other medical professionals.
Aside from the ways dementia affects different people on a physical level which can include the ability to ambulate, muscle contraction, etc., the mental symptoms can range from extreme forgetfulness to devastating interpersonal impairment. Some of the most pleasant conversations of my day are sincerely answering the same three questions over and over again for an hour with the same patients, but they have little to no short term memory.
I have also spent a lot of time in constant redirection and assurance with people that can no longer recognize relatives with whom they have spent the last eighty years. I have seen these individuals coddling realistic looking baby dolls as part of their care and have played music for people that are nearly catatonic, only to watch their bodies come alive with movement at the faint and automatic memory of their favorite songs, something that blessedly seems to remain long after their ability to speak has faded. I have heard ninety year old patients insist that their mother had just been to visit them or that their young children were running around the facility.
The common thread with which I approach these wounded patients is a measured gentleness that preserves their dignity and, to the greatest possible degree, facilitates their comfort in the immediate moment. For most of these people the present moment is all they have. Thus my preferred method is to redirect them in conversation and to by no means challenge their obviously factually incorrect assertions with harsh reality.
If an elderly woman whose mother has obviously passed insists that she must know when (her mother) will be visiting, I will respond that she’ll probably be around later. I have witnessed facility nurses and aides confronting such patients with the fact that their mother will not be visiting because “she’s dead,” repeating this every time the person asks. I will just as gently take such workers aside and explain that they are effectively breaking the news of the death of a patient’s loved one several times a day, each instance with its own accompanying trauma.
Another of my concerns is when I see people with dementia being treated like children because “they don’t know any better.” Almost every culture in the East has, currently or at some time in their history, had a practice of revering their elders simply for the fact they have lived longer and accrued more life experience than most.
Watching people with little wisdom earned through the kind of adversity their patients have faced treat said individuals as mere nuisances to be quieted makes me sad to say the least. I labor under the belief that my patients are people, whether they be completely lucid and able to participate in conversation or if they are unresponsive. As such, I also believe that each of these persons have the right to my full presence and attention and that, while their minds may have been rendered functionally impaired, their spirits are perfectly intact and engaging with mine. In short, I am no better than these people just because my mind is still functional.
Lastly, watching the pain endured by the family members of such patients is nearly unbearable. They faithfully and dutifully make their regular visits in the vain hope that they will see even the briefest signs of recognition in the eyes of their loved ones, only to inevitably leave disappointed and heartbroken. They deserve to know that their family members are being treated with the highest level of respect and dignity and with a kindliness and gentleness reserved for the most vulnerable amongst us.
Please keep these concerns in mind the next time you encounter a person with dementia. They are locked in a special kind of hell that I hope you and I will never have to experience.
How New Tech Can Support Caregivers as They Support Seniors
Up to 42% of Americans over the age of 65 take five or more medications, and in 2018, at least one in every five seniors experienced an adverse drug reaction. Such reactions are more common when seniors can’t properly adhere to the instructions that accompany their prescriptions.
In fact, according to U.S. Pharmacist, nonadherence accounts for about half of treatment failures and a quarter of hospitalizations every year. This, combined with the fact that healthcare providers are largely overwhelmed and overburdened, means caregivers have a unique opportunity to improve senior health outcomes. Caregivers can act as an extension of the medical industry to help seniors overcome the hurdles they face when it comes to medicating themselves properly.
Why Medication Adherence Is Challenging for Seniors
Experts agreed that the therapeutic efficacy of any medication requires an adherence rate of 80% or higher. To medicate properly, seniors must closely follow the instructions on each drug’s label and keep a consistent routine around consuming the right doses to avoid complications.
Unfortunately, the current average for medication adherence for chronic health conditions is only about 50%. For most patients, this isn’t enough to improve or stabilize their conditions — much less boost their life expectancy. But nonadherence is often a combination of hurdles that can be difficult for seniors to overcome on their own.
For example, the instructions on drug packaging may be confusing, and age-related memory loss can lessen the chances of proper adherence. The side effects of certain medications may also be uncomfortable, making patients hesitant to stick with them. Overall, keeping track of when and how to take various medications can be overwhelming for anyone.
The Important Role of Caregivers
Daily routines and medical schedules can be much easier for senior patients to adhere to with the assistance of a caregiver. As caregivers, a patient’s family members, friends, loved ones and volunteers can help ensure seniors take their prescriptions as directed and eat regular meals. What’s more, they can better monitor changing behaviors or symptoms that could indicate a poor reaction to medications.
Because the healthcare system is becoming increasingly overburdened, healthcare providers don’t always have the time or means necessary to devote to helping patients adhere to medications. Instead, the healthcare system should focus on providing caregivers with tools they can use to make senior care more manageable, especially when it comes to drug adherence. This will become even more necessary as the senior population grows.
The following tools can help caregivers address the medication adherence problem plaguing American seniors:
- Automated medication dispensers: Medication dispensers have come a long way — from manually organized pillboxes to modern, automated dispensers that ensure people get the prescriptions they need. One of the most valuable aspects of automated medication dispensers is that they can sync with a mobile application to alert caregivers of missed doses and low prescriptions.
- Personalized medication reminders: Medical alert systems and healthcare apps — or even simple reminders on a smartphone calendar — are vital to helping seniors prevent missed doses. Some apps are more detailed than others, so consider whether simple reminders will suffice or whether caregivers should receive confirmations as well.
- Home delivery of presorted medications: In terms of convenience, having presorted medications delivered directly offers a critical advantage for both seniors and caregivers. Automated delivery systems can be synced with medication reminders to create a convenient, holistic routine that makes adherence more accessible than ever.
When Medication Adherence Is Easier
There are very clear, immediate benefits to practicing better medication adherence — the most obvious being the success of the medication. Data suggests that for every 10% improvement in medication adherence, healthcare costs can be reduced by 29%.
Adherence also has a halo effect on other aspects of a patient’s life, improving chances of eating healthy, exercising regularly and taking one’s own personal wellness journey more seriously. Better adherence is key to improving seniors’ quality of life and reducing the burden on the healthcare system, and caregivers are in a great position to help make it happen when armed with the right tools.
Dilemmas and Solutions for Americans Raising Children While Caring for Elderly Family Members
Approximately half of middle-aged people in American provide financial, health, or emotional support for adult parents and minor or adult children. The term “sandwich generation caregiver” emerged in the 1980’s to describe middle-aged people who support minor children while providing physical, emotional, financial, or legal assistance to adults. Of course, doing so much exacts personal costs. Sandwich generation caregivers often experience stress-related illnesses, lost income, and decreased work productivity. They also find it harder to provide prolonged assistance to adult children.
Historically, caregiving could be shared by extended family members who lived in close proximity. Now more people relocate for career opportunities. Younger people may do senior care at a long-distance, or aging parents may move closer to one of their adult children and increase the burden on that family.
Caregivers who are employed full-time and taking care of multiple family members must adjust their work schedule and often take unpaid leave to fulfill obligations. They may lose Social Security and pension benefits or experience stressful financial strains that can cause them to become ill. Very often, sandwich generation caregivers choose to attend to the health of a child or parent and neglect their own health. Poor caregiver health is becoming a public health issue.
Sandwich generation caregivers also face barriers in the workplace and increase the cost of health care for employers. Health care costs for caregivers are approximately $13.4 billion greater than for employees that do not have caregiving responsibilities. Working caregivers may have a hard time juggling the crushing time demands of work and caregiving; and they may pass up promotions, decrease work hours, and take unpaid leave because they have depleted paid vacation and sick days.
Caregiver absences cost the U.S. economy $25.2 billion annually in productivity; and workers often quit jobs, lose lifetime wages, retirement savings, and pension benefits. Less than half of U.S. employers offer flexible schedules or the opportunity to telecommute to accommodate caregiving tasks.
Guilt and Exhaustion
Sandwich generation caregivers at the same time express guilt that they are not doing enough – and say they feel exhausted from doing too much. Guilt and exhaustion about how caregiving affects their children is a perpetual undercurrent of stress that affects their own health. In one of my research interviews, Sophie said “I was a single mom at the time…[my kids] really needed me here and then it would be my night to go shower mom and put her to bed… I’d cry sometimes all the way there and then I’d get there and Mom would be sitting there, facing the wall …and then on the way home you’d cry because…how could I think that I didn’t need to be there.” And in another interview, Ellie explained that she felt “…sometimes it’s almost like a ball and chain and then I think, “What am I teaching my kids… I want them to have the freedom to live their life without feeling obligated to take care of me someday. And sometimes I wonder how strong a message I’m sending in that regard.”
Self-Care Helps Caregivers Cope – and Jobs Can Too
Parenting and caregiving are both consuming roles – yet many caregivers understand that they still need to take care of themselves because otherwise the pressure or anxiety can be overwhelming. Self-care takes many different forms for sandwich generation caregivers: leisure, exercise, and socializing.
Abby, for instance, told me that even during the hardest part of her caregiving experience she still did Friday night dinner and cards with her husband and friends, took her Tuesday golf outing and walked her dog daily. Abby realized that carving out time for herself helped her stay healthy and not resent taking care of her dad. Similarly, at the beginning of our interview, Zach, said he “was not the type of person to feel guilty” about taking time for himself. He incorporated his kids into his coping strategies by going for long walks with them.
Not only do most sandwich generation caregivers need the wages and benefits that work provides, they also need a break from caregiving. Work sometimes offers a “guilt-free” break, allowing them to feel productive and serving as either a social outlet or a place for solitude, as two interviewees explained:
- Chloe stated that caregiving was mentally and physically exhausting. She admitted that it was hard to not feel guilty about taking time for herself but she had a “wake up call” during a physical when her cholesterol and blood sugar were elevated. She allowed herself to relax and socialize during her quarterly conference for work.
- Leah believed the hardest part of being a parent, caregiver, and professor was that she was “always surrounded.” Leah said that she didn’t take any time for herself. She felt she had to work to make up for the “hole” she put her family in to earn her degree but then she revealed that being in her office at work was like a “retreat”. She could play music and work at the computer and just be by herself while she graded papers and worked on her research.
What Employers Can Do
Employee assistance programs, flexible schedules, and telecommuting options can reduce some of the stress sandwich generation caregivers experience. Such employees often miss work due to caregiving tasks and their own poor health as a result of stress. They may not have the time to practice preventative health habits and coping strategies, and some develop cardiac, psychological, and chronic illnesses. Employee assistance programs can reduce such problems, to the benefit of all concerned. Employers can, for starters, create a supportive environment for caregivers and help them to seek and utilize institutional and community resources.
In some cases, flexible schedules and telecommuting may allow caregiver workers to maintain their job productivity and prevent valued employees from having to reduce work hours or quit altogether. Employers and fellow employees should also realize that for some caregiver workers time at the office can also act as a coping strategy because it offers a physical and emotional break. This should not be seen as a problem. When caregivers practice self-care, they are healthier – and can be more productive even as they balance the complex demands of their work and family responsibilities.
The Critical Role of Caregivers, and What they Need from Us
Caring for loved ones who have aged or become disabled is not a new concept. Many of the services provided in hospitals, clinics and even funeral homes were once provided by families at home. Particularly in communities where traditional cultural beliefs are highly valued, taking care of an aging parent or grandparent is still a responsibility that families (usually women) are expected to take upon themselves. Inner discord can arise when caregivers challenge these traditions which can lead to guilt and in some cases lawsuits.
For example, proceedings from a roundtable hosted by the National Hispanic Council on Aging revealed that caregiver stigma is prevalent among Latinos, which can prevent them from seeking support and resources. Without help, the risk for burnout increases.
Results from a 2015 study by the National Alliance for Family Caregiving and AARP revealed that “an estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months”. This number is likely to increase in the coming years due, in part, to an aging population.
Family caregivers perform a variety of services, including helping with ADLs, dispensing medications, managing finances, attending doctor appointments and advocating. Many do so while maintaining full-time employment outside of the home.
Respite is Essential, but lacking
The physical cost of caregiving is staggering, and there are few opportunities for respite. Even when respite is available, caregivers must consider the care recipients’ safety, and their desire to leave home. A person who has a disability or is ill can still make decisions regarding their care. So when they say no to respite care, it can’t be forced upon them. Desperate for a break, some caregivers have gone to extreme measures such as dropping off their loved one at the emergency room for respite. This is a problem that should be addressed in the years to come. But how?
Changes in the workplace
More companies and organizations are beginning to understand that caregiving without support can negatively impact worker productivity. In response, some companies have revisited their policies regarding family leave, allowing flexible work schedules and work from home opportunities. As employers seek new talent, they may find that policies such as these are attractive to job seekers. Two major companies, Deloitte and Microsoft, made headlines after incorporating paid time into their family leave policies. Other companies have adopted similar models.
As the nation grapples with how to provide better support to caregivers, it will need to improve major areas like extending paid leave to family caregivers, creating financial stability for those who need to provide full time care, and providing necessary training and respite to ensure the mental and physical well being for both the caregiver and the recipient. These changes require a shift in how we think about providing care, and changes in policy.
Caregivers are operating on tight schedules and don’t always have time to attend in person support groups. So having the option of connecting with others through online chats and support groups is more convenient for some caregivers. In addition, they could benefit from ongoing training and resources that will help them to more effectively and safely care for their loved one. This past September, the U.S. Senate passed the RAISE Act, which would require the development of a national strategy to address the growing challenges and economic impact of caregiving. The bill must now go before the House of Representatives.
The financial costs of caregiving cannot be ignored, and the average social security beneficiary does not earn enough to shoulder the burden of the financial costs they incur. Most caregivers likely work not only to maintain a sense of identity but also out of necessity.
Caregivers can face stressful decisions when it comes to choosing between work and providing care, particularly when their loved one is seriously or terminally ill. Too often, relatives are not eligible to be a paid for their time. And when they are, the earnings are not enough to make ends meet. Unfortunately, many caregivers often place their loved ones in skilled nursing facilities, simply because they cannot afford to care for them at home.
The question of who should provide care and how they will provide is one that has yet to be answered. While they wait, however, caregivers are facing stress and financial burden with few desirable options for support. And care recipients aren’t getting the care they so desperately need.
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