Emergency room staff call it a “pop drop” – when a disabled older person comes in for medical attention, but it seems like the person who takes care of them at home is also seeking a break from the demands of caregiving.
It’s been hard to actually study the phenomenon. A new University of Michigan study suggests that tired family caregivers are associated with greater ER visits and higher overall health care costs for the person they care for.
In a paper in the new issue of the Journal of the American Geriatrics Society, the team reports their findings from a study of 3,101 couples over the age of 65, each with one spouse acting as caregiver for their disabled partner.
The researchers looked at the Medicare payments and emergency department visits for the disabled spouses in the six months after the caregiver spouses took standard tests to measure their fatigue, mood, sleep habits, health and happiness.
Even after they took into account many factors, the researchers found that in just those six months, emergency department visits were 23 percent higher among patients whose caregivers had scored high for fatigue or low on their own health status.
Patients with fatigued or sad caregivers also had higher Medicare costs in that same time period: $1,900 more if the caregiver scored high for fatigue, and $1,300 more if the caregiver scored high for sadness, even after all other factors were taken into account.
The cost of unpaid help
“Many of us who work in clinical settings feel that patients with high home caregiving needs, such as dementia, often rely on the medical system as a source of respite for their spouses or other caregivers, because other respite isn’t paid for,” says lead author Claire Ankuda, M.D., M.P.H. “But there hasn’t been a lot of data about it, and only recently has our society been talking about caregivers and potential ways to incentivize and support them as a way of keeping patients living at home.”
Ankuda, who led the study during her time at in the Robert Wood Johnson Clinical Scholars program at U-M’s Institute for Healthcare Policy and Innovation, is now training in palliative care at the Icahn School of Medicine at Mount Sinai.
“Informal caregivers, including spouses, enable older adults with functional disability to stay out of the nursing home and live at home where they’d prefer to be,” says senior author Deborah Levine, M.D., M.P.H., an assistant professor of internal medicine and neurology at U-M.
“We need to do a better job of identifying and supporting caregivers experiencing distress, in order to help caregivers feel better and hopefully improve outcomes in older adults with disability.” Deborah Levine, M.D., M.P.H.
Long-term data gives key insights
The couples in the study were all taking part in the long-term Health and Retirement Study, conducted by the U-M Institute for Social Research on behalf of the National Institutes of Health. Ankuda, Levine and their colleagues probed HRS data because it allowed them to correct for factors that other, short-term studies can’t – such as the baseline level of Medicare costs, demographic differences including income and education, and even whether the couples have adult children living nearby.
The findings add hard new data about the link between caregivers’ own experiences and the amount the Medicare system pays to take care of those the caregivers take care of at home.
Nearly 15 million older adults get help with everyday activities from spouses and other family or friend caregivers. In the new study, the researchers included couples where one spouse got help from the other with activities such as bathing, dressing, walking, getting into or out of bed, shopping, cooking, and taking medications.
Helping with these tasks on a daily basis, without pay or respite, can take a toll on the caregiver’s own health, wellness and mental state – which can lead to burnout. Medicare does not offer payment or formal respite coverage for family or friends who take regular care of older adults – and only covers home care by certified agencies under certain circumstances.
More research & services needed
Ankuda notes that studies on the impact of supporting family caregivers more formally are just beginning to produce results.
Meanwhile, health policy researchers are beginning to suggest that it may make fiscal sense to incentivize home caregiving, to keep seniors from needing more expensive nursing home care.
“I definitely think there are specific services that could help caregivers, if we can identify those people who are highest risk and provide a basic level of support such as an around-the-clock geriatric care call line that could help caregivers feel less isolated and talk to a nurse about whether, for example, to go to the emergency department,” Ankuda says. “This is a high-cost, vulnerable population.”
Formal respite care, peer support groups and other options could also help stave off fatigue and sadness – and the hospital staff who notice “pop drop” practices could help steer caregivers to such options. So could the primary care clinicians who take care of both the disabled spouse and the caregiver.
Because the new study takes into account the level of Medicare spending for the disabled spouse in the six months before their caregiver was interviewed, it may actually underestimate the impact of caregiver fatigue, she notes.
Indeed, before the authors corrected for the full range of factors, they documented that Medicare costs were lower for patients whose spouse-caregivers who reported being happy or rested. They also saw higher costs among patients whose caregivers had higher depression scores on a standard mood questionnaire.
One factor that wasn’t associated with higher costs in the new study was the caregiver’s score on a standard measure of sleep habits. Sleep disruption is harder to quantify in older people, Ankuda notes. But the measurement of fatigue, which can result from both the strain of caregiving and poor sleep, was clearly associated with both higher rates of emergency department visits and higher overall costs.
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.
Low Medicaid Rates Limit Beneficiaries’ Access to Assisted Living Facilities, Quality Care
More than 700,000 elderly and disabled Americans receive health care in residential care communities, such as assisted living facilities. As the population ages, this number will grow.
A new study by RTI International found that low Medicaid payment rates for services in assisted living and similar settings discourage residential care providers from serving Medicaid beneficiaries, which limits their access to community-based residential care.
The study found that some residential care settings limit the number of Medicaid residents they serve or decrease operating expenses in ways that may also reduce quality of care.
“Medicaid payment rates only cover services in residential care settings; they do not cover room and board,” said Michael Lepore, Ph.D., senior health policy and health services researcher at RTI and lead author of the study. “One of the access barriers is the difficulty that Medicaid beneficiaries have paying for room and board in residential care settings because of their low incomes. This situation dissuades residential care providers from serving Medicaid beneficiaries.”
Residential care settings are community-based homes or facilities that offer room, board and care services, the most popular being assisted living. Compared to nursing homes, these settings often are less institutional and are often the preferred setting.
If Medicaid beneficiaries with long-term service and support needs cannot access residential care settings, then nursing homes may be their only option, ultimately costing taxpayers more money because Medicaid payment rates for nursing homes are higher.
The study, published in the Journal of Housing for the Elderly, found barriers that influence Medicaid beneficiaries’ access to state-licensed residential care include Medicaid reimbursement rates for services, the supply of Medicaid-certified residential care settings and beds, and policies that affect room and board costs for Medicaid beneficiaries.
Researchers examined Medicaid policies in all 50 states and the District of Columbia, interviewed subject-matter experts, and conducted four state case studies informed by reviews of state policies and stakeholder interviews.
“States need to ensure their Medicaid rates for residential care services are sufficient to maintain an adequate supply of these settings and beds available to Medicaid beneficiaries, while also safeguarding quality of care and taxpayer resources,” Lepore said. “Higher Medicaid rates may encourage more residential care settings to serve Medicaid beneficiaries, which may help reduce nursing home use by older adults and people with disabilities and potentially reduce Medicaid spending on long-term services and supports.”
Elder Abuse in the Twenty-First Century
In this “silver tsunami” era, elder populations are outnumbering the younger workforce. This creates significant inequity and more than enough opportunity for people to take advantage. Whether financially, neglectfully, emotionally, physically or sexually, seniors in the United States are at a high risk for exploitation.
Seniors can be abused by underpaid and overworked employees. Nursing shortages, along with an explosion of senior populations, lead to less competent care resulting in bedsores, malnutrition, falls, sepsis or other damages from neglect. In addition, economic woes lead to a rise in physical and financial abuse perpetrated by family members, caretakers and even outsiders. Older people are more susceptible in giving of information without asking questions, which makes financial abuse a low-risk, high-reward crime area. Having adequate representation can be a problem as well.
Social Security and other government assistance is typically managed by a person with power of attorney, but occasionally the government will designate someone to perform economic functions. The potential for abuse necessitates records to be very exact and reported regularly. Social security, wills, estate management, retirement portfolios and such accounts are difficult for most clear thinking people. It has been reported that any older person, much less those with dementia, make bad financial decisions.
Knowledge of elder abuse is not up with the times, decades behind the experts in the field. It’s difficult to even get a report filed. The myriad of potential problems is worsened due to many inappropriate state laws being slow in prosecuting offenses. Institutional Review Boards don’t commonly deal with such cases and there are not many federal regulations. Meanwhile, seniors don’t always have a great memory for testimony to help their cause in getting charges.
It is going to be hard for the courts to catch up with the times. Currently, elder abuse is acknowledged by WHO as a human rights violation with one in ten seniors falling prey to some crime. That ratio becomes one in two concerning people with dementia. As bad as the current populations trends look now, the future looks worse. 85+ is the fastest growing age group in the United States and the 60+ population is expected to double to over 2 billion people by the year 2050.
What to do?
Local district attorneys need tougher laws that focus on stopping predators and ways to enforce those laws. Whether with state or private agencies, seniors need more representation in housing placements or other living transitions and their monetary affairs.
Elders need younger people to show interest. Nursing home staff is going to be more careful with people they know are being checked on. Other relatives that are taking care of a loved one, should be helped out too. Stopping by or ask about older family members shows that someone is cared for, reducing the abuse risk. Importantly, it also breaks the cycle of care and provides everyday caretakers with the knowledge that they could get a break if needed.
The marks of abuse need to be more commonly known and easy to identify. Upwards of 500,000 seniors are victimized, but very few of these cases are ever identified, much less reported and charged. It helps to have advocates who can sense physical harm, negligence, medical malpractice and other atrocities. Physical and sexual abuse are easier to spot than most neglect, so it takes a concerned loved one to spot personality changes or injuries that are inconsistent with the individual.
Mistreatment is more likely to occur to seniors who have experienced past abuse, in part because those people are frequently left in bad situations and never given much help. Senior women are more victimized than men, as are people in poorer health and those with lower incomes. Many other obvious risk factors and tell tale signs exist to make others aware. We need to be more empathetic and better educated.
The onus is on the concerned relatives to care about what facility seniors are placed in. For-profit corporate chain nursing homes often have less than ideal conditions for staff or residents. Relatives should take the time to tour various homes, make observations, and find the right fit. The most important way to combat elder abuse is by being involved. We just can’t put elders into homes and forget about them. It’s not supposed to be a prison for people we can’t help anymore. Nursing homes are expensive places that should be treating residents like royalty. It takes our effort to keep things as they should be.
To facilitate better treatment, we need to listen to both seniors and caregivers. We need to be attuned to what seniors needs and worries are. We need to speak up and file charges when something has happened. One in ten reported cannot be acceptable. If a caregiver is stressed or burned out, we need to make sure they can get the breaks they deserve to provide the best care, just as we must make sure caregivers are getting paid adequately for the grueling work they put in.
As with raising a child, it takes a village to care for our elders. We need to impress upon society in general that it is everyone’s responsibility and how this needs to happen. We are all going to be in this position someday, we should be doing everything we would want others to do for us as we become more helpless.
Are We Forgetting About The Sandwich Generation?
When working with elderly patients in health care facilities, it is likely that we may forget about the needs of their adult children aka The Sandwich Generation. The sandwich generation is adult children typically between the ages of 30-50 who are caring for their aging parents while taking care of their own family as well.
Taking care of young children while caring for aging parents puts a great deal of stress for the adult children. In my experience in working with families in hospice, I’ve noticed some factors that contribute the stresses of this generation:
- Financial Concerns – Older Americans are living off on their fixed income such as Social Security, VA pension, personal savings which may not be enough to pay for certain expenses. Many retirees can not afford to live in assisted living facilities, private home attendants, monthly expenses in their current home. The children often struggle as they have to figure out how to pay for these expenses if their income is limited as well. This issue is very common for funeral expenses since many retirees don’t have life insurance.
- Feuding Relatives – Adult children may have a long history of sibling rivalry which can leave an impact on the care of their elderly parents. One child may agree to hospice care while the other believes in aggressive treatment. The rivalry can easily be carried into a facility where we, the social workers usually witness the drama.
- Lack of Awareness – You will be surprised how may adult children are not aware of health care proxy, advance directives, or how life insurance works. Some assume that their parents insurance will cover everything. Many times I had to inform the children that Medicare does not cover long term cost which brings back to #1 on this list.
- Bad Timing– Sometimes adult children may wait till the last minute to make handle their parents affairs. Reasons for this occurrence may be that they learn about the resources too late, procrastination, denial or lax in their own time management. I had adult children asking me how they can get a power of attorney for their parent, and the patient is unresponsive, near death.
- Mom and Dad Are Not The Same – We know our parents from the time we were born. We are not use to seeing our parents getting older and sicker. Many adult children may not be prepared to watch their parents deal with debilitating condition such as Alzheimer’s Disease. On the other hand adult children may have their own personal issues about their parents that was unresolved. These changes can bring emotional distress to the children.
When working in hospitals, assisted living facilities, home care agencies, or adult day programs its very common to see these issues surface with this generation. However, social workers who work in private practice or other settings might encounter someone who experience this as well. Unfortunately, we are unable to prevent adults from getting older and prevent the sandwich generation to face this situation. We can however, take some steps to reduce the burden and educate this generation at our place of employment. Here are a few things to consider:
- Assess All Legal Health Forms – Many hospital staff are required to ask patients and families about advance directives, and health care proxy. Families should be educated the advantages of having these forms in place. This can make the health care decisions easier for the adult child.
- Discuss Available Services – Be aware of the services in your community which will allow you to share it with your clients. Services include, Medicaid, home care services, senior subsidize housing, elder law attorneys are some of the examples of resources for the elderly. It’s very important to be aware of the referral process of these services. For example, filing for food stamps in NYC is entirely different than filing it on Long Island. If we are knowledge about the services, than the family is well informed of their options.
- Review their coping techniques – Care giving is physically and emotionally stressful. It’s very important that we assess how the adult children are coping. Do they have a counselor who they can speak to? Do they receive support through their place of worship? Are they attending care giving support groups? What are their personal issues about their parents that they are struggling with? These questions are some of the examples we can ask when assessing their situation.
How social workers intervene depends on the needs of the adult children. In one situation, the child may have all the concrete needs in place but still requires emotional support. On the other hand, there will be another case where the social worker may have to review health care proxy, discuss Medicaid service, and mediate the feuding siblings.
At the end of the day, you could never give too much emotional support to the sandwich generation.
Are We Afraid of Developing Technology for the Elderly
I work for a hospice program providing palliative care which means we attend to the emotional and spiritual needs of terminally ill patients at an inpatient facility or at the patient’s home, and I see lots of people near the end of their life. Some of them are too lethargic to use an iPad, but many are not.
Though all of my clients are dying, they are otherwise able to function normally for a person their age. Those who are not lethargic or in their last days often tell me how bored they are!
They speak about their inability to find anything that entertains them. So, I did a little research on the subject thinking “Well maybe a computer for older folks might help.” Turns out there are some, the options are not great, and I have yet to see one in an assisted living facility.
So why has Apple not attempted to make iPad adaptable to Seniors’ needs?
Personally, I want to be able to browse the internet when I am seventy, and I want to be able to keep up with the news when I have arthritis and can’t swipe properly. Below are some reasons why we don’t have it and why we are going to need it.
The affordable personal computer came out in the 80’s which means those who grew up with computers are now just entering their early to mid 40’s. To everyone else, computers were new and confusing. However, this doesn’t excuse the lack of technology for those who are older, but it does help to explain the lack of attention to this market.
In-fant-til-ize-a-tion: To treat or condescend as if still a young child
Would you let a baby play with your expensive iPhone? If the answer is yes, you have more money than I do. Most people are afraid their child will break their expensive toy. They are not wrong either most children will. We assume the same of older adults, that they will either break it out of frustration or will not be able to comprehend its use. Neither is true. There are many older adults who know how and enjoy using computers to entertain themselves
Likely the worst offender, we refuse to make these adaptations to technology because doing so would be admitting our own mortality. It would require acknowledgment that we will grow old and may eventually need these devices ourselves. Once we can admit we are growing older as a society more and more of these devices will be present.
That’s it for now, but I can’t wait for the Angry Bird’s senior edition to come out. In the comments below tell me about what you want on your computer when you are older!
CleverCare Watch Brings Peace of Mind
A few weeks ago at the Home and Community Health Association conference, I met some of the team behind CleverCare, a new service that connects an Android smart watch to a web interface and a 24-hour call centre.
CleverCare is the brain-child of Maria Johnston. As the website explains, “developing the Clevercare system was driven from a personal need for Maria to make a positive difference in the everyday life or her parents. She then found that her family’s problems were experienced by many and now, through Clevercare making lives better with independence and peace of mind can be achieved for many.”
Designed for people with dementia, the Android watch runs a simple app and contains a GPS geolocator. The device is tracked via Google Maps in an online dashboard. Boundaries can be set to alert family, friends or support workers if someone wanders beyond a safe distance. Reminders can be pushed to the watch via the dashboard.
The watch will also alert a call center at the push of a button. The watch can receive phone calls from the call centre (in fact any phone), to establish the person’s need. If unanswered the call centre will contact a nominated person or send an ambulance to the GPS location.
As a user of a Bupa alarm, which is wired to your home, the CleverCare watch’s potential to be a safety net to a wider range of people was instantly obvious to me. I was soon talking to Maria and Shane, CleverCare’s sales rep, about the possibilities for younger people with unique function living independently, but anyone who may be vulnerable to risk and need assistance could utilize the device.
I notice that since the conference, CleverCare has widened its target audience to include children, people working alone, cyclists and more. At the end of the conference Maria and Shane offered me a watch to use. Already I am noticing the peace of mind my Bupa alarm gives me at home but, of course, with the watch, I have it wherever I am.
The dashboard is currently oriented to be ‘driven’ by the support/contact person, not the watch wearer, because of the focus on dementia support. A reorientation could put the watch wearer in the driving seat and, if more contact people were able to be added, a chain of contact, similar to my Bupa alarm, would make this technology truly revolutionary in terms of providing people a sense of safety and confidence.
The watch CleverCare uses at the moment is not the most attractive accessory but, again, it is designed for simplicity of use by older people and those with unique cognitive function. I’m not sure what I’ll do when I get my Apple Watch!
Which brings me to what I see could be the ultimate opportunity – the development of a standalone CleverCare app. Whether on a smart watch, phone, tablet or even desktop device, an app could bring this safety technology to anyone, anywhere.
If you see the benefit of CleverCare for yourself or someone else, do contact them directly or let me know so I can pass the interest on to Maria and her team. There is a cost but I understand it can be funded by the likes of ACC or Individualised Funding. And of course, the bigger CleverCare’s market, I’m sure the more cost effective it can become.
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