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Archive for the ‘
Caregiving ’ Category
According to the National Health Interview Survey (2000-2005), slightly over one-third of all adults in the United States have a condition that is "activity limiting". Between 2000 and 2050, the number of older people is projected to increase by 135 percent. Moreover, the population aged 85 and over, which is the group most likely to need health and long-term care services, is projected to increase by 350 percent. Of particular importance will be the shift from acute to chronic illnesses such as Alzheimer's Disease, heart disease, and osteoporosis, rather than acute illnesses.*
With chronic illness often comes disability, meaning that long-term care services, such and nursing homes, home health, personal care, adult day care, and congregate housing, will become much more important sources of care. As people age, it is highly likely that many, if not most, will be "disabled" in some way as their ability to engage in medical, physical, or mental activities diminishes.
"Disability" is defined in the federal Social Security Disability Act as the "inability to engage in substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or has lasted or is expected to last for a continuous period of not less than 12 months.” It is likely, then, that caregivers and professionals providing care and services for an aging adult — whether a love one, client, patient, or consumer — will encounter someone who will be "differently-abled."
A turning point for older Americans and people with a disability happened in the 1960s. Before then, people with disabilities were not even considered by policy makers. With the social justice movements of the sixties, consumers, advocates, and service professionals began to focus on service delivery for people with disabilities.
Against this backdrop, Independent Living Centers came into being. Independent living has to do with self-determination for people with disabilities with the right and opportunity to pursue a course of action with the freedom to fail and to have the opportunity to be as self-sufficient as possible.
Forty years after the first Centers opened, Independent Living Centers remain an overlooked source of information, referrals, independent living skills training, peer counseling, and advocacy for people with disabilities (and their families and caregivers).
Independent Living Centers are typically non-residential, private, non-profit, consumer-controlled, community-based organizations that serve and advocate for people with all types of disabilities. The goal is to assist individuals with disabilities to achieve their maximum potential within their families and communities.
In the United States, there are nearly 500 Independent Living Centers and there are others in Canada, Europe and Africa. In the United States many are state supported.
The passing of two laws has improved the situation for older Americans with disabilities. But, not enough. The 1965 Older Americans Act (OAA) coupled with the 1990 Americans with Disabilities Act (ADA) have improved circumstances for many seniors with disabilities, but the landscape — fourteen years after ADA and forty years after the Older Americans Act – is far from idyllic.
The framework for the ADA was based on several findings, among these, "Some 43,000,000 Americans have one or more physical or mental disabilities, and this number is increasing as the population as a whole is growing older."
Other findings contained in the ADA have striking and parallel relevance for older people: "People with disabilities, as a group, occupy an inferior status in our society as do older people." Also, cited: "People with disabilities are a discrete and insular community who have been faced with restrictions, limitations, and unequal treatment." Clearly any older adult with a disability faces at the very least, a double whammy.
As our population ages and falls prey to chronic diseases which cause disability and loss of daily function, there will be fewer family members (mostly children) to care for them. Families are now frequently spread out across the county, thus creating an issue when it comes to caring for an elderly parent. Often, the children work full time or have families of their own and are unable to commit to caring for an elderly, needy parent. In addition, family members may become overwhelmed with the responsibilities of caring for an elder or may not know what resources are available to assist the parent. Due to these issues, people are frequently turning to the "Professional Geriatric Care Manager" to oversee the care of the elderly person.
Professional Geriatric Care Managers (PGCMs) are health and human services specialists who help families care for older relatives, while encouraging as much independence as possible. The PGCM may be trained in any of a number of fields related to long-term care, including, but not limited to, nursing, gerontology, social work, or psychology, with a specialized focus on issues related to aging and elder care. The PGCM acts as a guide and advocate — identifying problems and offering solutions.
From 1992 to 2003, I was the sole family caregiver for my father who had complex care needs as a result of prostate cancer. I was faced with a range of challenges in an unfriendly and largely unresponsive world. Professionals from traditional disciplines where ill-prepared to recommend other than conventional approaches to care which, for me, were unacceptable.
It was the early 90s when I learned about Geriatric Care Management from a local newspaper article. Fortunately, one of the first Geriatric Care Managers in the county practiced in my area. It was solely from her guidance, coaching, and support that gave me the foundation to successfully navigate the turbulent waters of his care.
My father was older than the parents of my peers as my parents had me late in life for that time. He lived throughout these years as a paraplegic as a result of the cancer. In the last five years of his life, he, at first, was an above-the-knee amputee and then later became a double above-the-knee amputee.
I was faced with a range of challenges in an unfriendly and largely unresponsive world. As a result, I borrowed resources and support from a variety of communities, including the spinal cord injury community. Also, helpful was the peer counseling and caregiver support that was available through the local Independent Living Center which gave both me and him the courage and support for him to live independently and to "age-in-place".
Mentioned earlier, with the support and guidance of a Geriatric Care Manager – which at that time was a little-known specialty – and my own capacity to problem-solve and leverage resources, my father and I modeled a living and care arrangement that was unusual and creative. However, the journey was circuitous and back-and-forth — from hospital to rehabilitation hospital to nursing home to my home to his home.
This cycle repeated itself many times, until finally, some stability was achieved and he lived in his own residence for the last six years of his life.
Now, as a Geriatric Care Manager and Certified Senior Advisor, there are many lessons that I learned from caregiving and managing the care of an older adult with a disability. While the lessons (and my examples) correspond to a person with a physical disability, several are applicable for other disabilities as well:
1. Be a relentless advocate. The law is on your side. I recall having to obtain a special dispensation to have a Para transit bus extend its pick-up point by only 50 yards so that my father could board. After struggling for months, I prevailed after many letters and phone calls.
2. Get into a support group and link-up with a network. The spinal cord injury community introduced me to individuals with spinal cord injury who, in turn gave me detailed information – not generally available at that time – for managing bowel and urinary incontinence. Plus, they gave me "permission" to be angry with my father when he was irresponsible in managing his own care.
3. Seek out care from a rehabilitation hospital. Too often, people are discharged to a sub-acute facility for rehab when in fact they would be better served at a rehabilitation hospital. Be aware of the difference.
4. Insist that durable medical equipment – such as scooters, canes, walkers, wheelchairs, seats, beds, etc., assistive technology and devices be appropriate to the person's needs. Be sure that any "aid" is fitted to the individual's capability, height, weight, and use. Avoid using "one-size- fits-all equipment.
5. Insist on an assessment and guidance by a specialist. For example, for a person with low-vision challenges, a general eye exam will not suffice. Get an assessment from a low vision specialist, a licensed Doctor of Optometry or Ophthalmology, who is skilled in the examination, treatment and management of patients with low vision and other visual disabilitites. Mobility training for people with low vision can usually be obtained from a Center for Independent Living.
6. Avoid patronizing stores, offices, places of worship, and other entities that are not ADA compliant or have made no effort to "welcome" people with disabilitites or to make provisions for accessibility beyond "a ramp."
7. Familiarize yourself with the assistive technology that is available for a specific disability; for people with cross-disability, explore the resources and referrals for each disability.
8. Become knowledgeable about universal design and its principals to allow seniors with a
disability to age-in-place, safely.
9. Be sure to have all necessary estate documents in place, including a release that allows a caregiver to obtain and be given personal information.
10. Identify a reliable source for securing paid caregivers, companions, or personal care assistants. Know the difference between an agency and a registry and whether companion care, personal care assistance, or nursing care is needed. Many Independent Living Centers maintain a registry of "personal care assistants" with payment arrangements determined privately.
And most importantly, expect opposition and discrimination. In Westchester County, New York in 1992 as I was searching for housing for my father, a new residence for seniors opened. While he "appeared" to need lots of care and assistance, he, in fact, through training – for both of us – he was very independent, needed minimum assistance and was "enabled" at every turn.
However, because he was in a wheelchair, the new senior residence refused to lease to him. I took the matter to the Housing Authority; an investigation ensued and the residence was cited for discrimination.
Programs and services for seniors with disabilities and their caregivers are growing in an attempt to become ADA compliant and responsive to older adults. I have witnessed and experienced new technology and even new attitudes even in the three years since my father's passing in 2003. In the 1990s, for example, there were few sources of adaptive clothing for people with physical limitations and even fewer choices for incontinence products and methods for managing incontinence. Now, traveling with a person in a wheelchair, isn't the gargantuan task that it once was only five years ago.
However, I look forward to delivering service to older adults and seniors with a disability without having to "put up my dukes" to make a difference in their lives.
__________________
*Pawlson, G. Chronic Illness: Implications of a new paradigm for health care. Journal of Quality Improvement, 194; 20:33-39.
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“In the sunset of my father’s life, he allowed me to accompany him. . . to be his caregiver. Through this journey we, ‘real men’, were able to share emotions and relate to each other during a transition from father and son to companions on Checcino’s final mile to eternity.”
Introduction
This complex thought is simple. As William Butler Yeats once wrote: “The journey internally is not only an important journey, it is the only journey.” In caring for others, we need to allow ourselves balance and time to renew our own spirit.
The number of households involved in caregiving is expected to increase due to the increase in longevity. A “Fortune 200″ article explained: “Extended life span does not mean people stay young longer. It means people stay old longer. The ‘Golden Years’ are lasting longer and losing a lot of their shining potential.”
Caregiving is often thrust upon the family member who is geographically closest to the person needing care. Love and obligation are other factors in the decision. Someone needs to accept responsibility to assist the elderly with the necessary choices. It would be great if there were a group of family or friends to share the caregiving, but it often is one person who accepts the major obligation. It can be a fulfilling but stressful situation.
Caregivers in general do not get consistent help from family members, although family input is important. Illness can bring about reconciliation, healing and a realization of what is truly meaningful. We hope for that ideal, but perhaps it is improbable.
What to Expect
Don’t expect an instant attitude change from everyone. Each person handles aging and death in their own way. Some people can’t deal with the situation at all, but may be able to offer different types of support.
In my own case, my sister Donamari lived out of town and was suffering from multiple sclerosis. She was very emotional about not being in closer proximity to Dad and the rest of the family, but her frequent calls, e-mail messages and occasional visits were a great comfort.
We may not have all our family near physically when we need them, but in this era of modem technology most families can remain close through the phone and computers…they can always be near us.
My brother Maurice and wife Dianne would bring cheer to Dad by sharing his craving for junk food . . . often arriving with a breakfast sandwich for each of them.. .or indulging Dad with hamburgers and fries… why not?
Although Dianne spent time making home-made treats for Dad, I think his favorite was the salty, fat-filled, fast foods. They all enjoyed the time together and this too brought comfort and connection.
Help Is Available
Depression is common in both the caregiver and the receiver. Over 49% of caregivers have experienced prolonged depression. Caregiving is an emotional roller coaster ride. Just remember, help is available.. .ask.
There is external and internal pressure in the care process along with doubt and worry. It is not wrong to feel this way…it just needs to be dealt with.
Tension is inevitable and it is not unusual to be overwhelmed. The gut speaks.. .at times the knot in my stomach. .. the lump in my throat and tears in my eyes were dominant…but I knew I had to go on…one step at a time…gathering the best of each day for tomorrow’s memories.
This particular voyage through time is dappled with the unexpected. There are moments that vibrate with deep feelings and many others of monotony and melancholy. Ironically, all are intervals that define life.
A Matter of Balances
Caregiving must be a balance of the needs and peace of mind for all generations involved in the extended care process.
For some of us, when the need arises, caregiving can become our purpose in life. It is a profound responsibility that demands we honor the needs of all involved.
Balancing this need with autonomy for the individual is a delicate process. The aging person should be assisted in making choices about where to live and the level of care that is required.. .not just told what is going to occur. It is imperative that the voice of the cared for be heard.
At your home or in a professional facility the cared for person should have a say in their meals, schedules, and social involvement… .for as long as possible. All this, of course, is dependent on the cognitive functioning level of the individual. My dad was mentally with us for all the major decisions.. .and it should have eased the weight on my heart.. .but that was an unrealistic expectation.
Spending the last days of mortality with my dad freed me from my self-imposed, absolutely structured life. I found it possible to change, and learn. Life is what is important, not the “stuff” that clouds our vision of the truth.
Therapy and Respite for Caregivers
Take advantage of therapy and respite time for caregivers. Remember, if the caregiver gets ill, burned out: depressed, sad, angry or runs away to escape… it will leave another need. All or some of these reactions are possibilities… and are common occurrences. The wish to escape to any destination is a normal consideration at times and should not promote guilt.
This is all part of the frustration package. The caregiver must deal with not being able to “fix everything” or do everything. Try to respect destiny and make passing easier for the one reaching the Final Portal.
Exercise, maintain a good diet, save some time for a few moments of quiet personal pursuits. Support groups are also a good venue for caregivers. Sharing makes the travails easier to bear. There is help in the community. . . take time to find it.
It is okay to be afraid. For most of us death is a voyage into the unknown and a long separation is inevitable. It is okay to show emotion. Grief and relief often mix with profound sorrow. . . but the living must live. There is life for the caregiver after the death of the loved one.
We are all headed in the same direction . . . how will you wish to be cared for?
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Checchino: A Father & Son Journey Toward Dusk can be purchased online.
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Introduction
According to statistics there are more than ___ million elderly Americans living with some type of disability.
Q. Who is considered disabled? For example, does this include someone with Alzheimer’s Disease or only someone with a physical disability?
Q. Will health insurance pay or Social Security Benefits pay all of the costs for their care?
Q. What kind of credentials and special training do a social workers who specializes in caring for the elderly and handicapped have?
Q. Can my loved one receive care at home?
Q. If my loved-one is cared for in a special facility, what is the typical day like at the facility?
Q. What are the most common concerns that elderly handicapped seniors have?
Conclusion
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Introduction
Caregiver stress has been widely publicized and studied. Many times, one might think that the stress of caregiving is lifted once the loved one has died. However, the risks to the caregiver can often carry on long after their loved one's death.
Death brings finality and shock – no matter how well prepared one might be. All death is sudden, even when it is anticipated. For those who have provided care for the loved one for years – through illness and health – the shock and loss can sometimes be overwhelming. The loss often goes far beyond the actual death as well. Losses can relate to finances and income, home and living arrangements, a major change in living patterns and the consuming role of caregiver, which becomes void when the role is no longer needed. All these changes contribute to the feelings of depression and grief that follows.
But what happens when the former caregiver becomes so overwhelmed with the losses that he or she begins to suffer from major depression and threat of suicide? Often times, so much focus is on the person who is ill, that when death finally comes, many see it as a relief and the freeing of the caregiver from the demands of the illness. The enormity of the loss is sometimes overlooked or underestimated.
At this time, it is likely that the former caregiver is experiencing a profound loss of purpose and identity, much like that of "empty nest syndrome". These caregivers suddenly find themselves in the midst of changing roles and responsibilities. No longer are they the caregiver, but rather the survivor, the one whom now can "get on with their life" as if all those years can be erased by this single event.
Feeling sad and lonely are part of the grieving process. Physical symptoms such as exhaustion, loss or increase of appetite, insomnia, tightness in the chest, shortness of breath and dizziness may arise.
Some of your emotional responses may include:
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numbness |
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irritability |
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shock |
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inability to concentrate |
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anxiety |
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withdrawal |
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guilt |
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extreme feelings of worthlessness |
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anger |
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fear of “going crazy” |
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depression |
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These feelings are difficult but natural. However, if these symptoms become severe and seem to interfere with daily life, or if the former caregiver expresses thoughts or plans of suicide or expresses thoughts of death, it may be time to pay closer attention to what may be happening.
At these times, it may be friends or associates who first see signs of trouble. Ignoring the signs, and hoping that they fade with time, is not a good option. So, what should friends and families of former caregivers do if this situation arises? Some useful tips include:
- Accept and listen unconditionally, without judgment. Listen, but do not lecture. Accept what is said and take it very seriously. Individuals may use various terms or express themselves in muddled ways, about taking their own life, such as "I wish I could go to sleep and never wake up," or "I want to see my mother again," "The family would be better off without me," or "I can't live any longer without…".
- Sometimes surviving caregivers may show their "happy" or "functioning" face to others, and mask their anxiety, depression, and loneliness. They may not want others to know how lost and vulnerable they are. For loved ones, be attentive and check on these survivors with care, compassion, and offer to listen and/or talk.
- Talk openly and honestly. There is stigma and shame attached to suicide and your loved one needs to know they can talk to you openly. This will also help you determine if they have a plan so you can pass the information on to their mental health professional. If they do not have a mental health professional, you can consult a mental health profession or suicide prevention hotline for advice.
- Do not preach or moralize. Suicidal people know already that killing themselves is considered wrong by society's standards; they do not need to hear it from a loved one.
- Talk about thoughts and feelings and focus on the person and the problem. Talking about thoughts and feelings with a suicidal person lets them know that someone is trying understands the pain they are in, the hopelessness and helplessness that they feel.
- Help the person focus on solutions. Talk about how they have coped in the past. Help them increase their understanding of the alternatives to suicide. Evaluate and talk about what is needed to improve the situation.
- Follow-up. Do not try to handle the situation on your own! Seek professional mental health help. Ongoing treatment is essential. Learn the signs and symptoms of relapse and what you can do and what your loved one must do.
- Remember special occasions such as holidays, birthdays, and anniversaries (including the date of their loved one's death). Make special plans on anniversaries or other significant dates and make arrangements for family or friends to provide social support.
- Take care of yourself and deal with your own feelings. Talk to a loved one or friend who cares and can give you the care and support you need.
***
Recommended reading: Waking Up: Climbing The Darkness by Terry L. Wise.
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| Terry Pierson / The Press-Enterprise |
Louise Hernandez, 82, helps her daughter
Cesaria Hernandez wash dishes after dinner
in her daughter’s home in Hemet. |
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Introduction
Louise Hernandez, consummate caregiver and fiercely independent, raised eight children. Three years ago, one of them, Cesaria Hernandez, figured it was time to take care of her mother.
Louise, then 79, sold her four-bedroom home and moved in with her daughter’s family in Hemet.
“It has been a transition of great adjustments and surprising challenges for all of us,” said Cesaria, 38, who has six children at home, including 1 ½-year-old triplets. “But amazingly, it has all come together wonderfully for our whole family.”
Making room for Mommy and Daddy is a scenario that’s increasingly being played out among grown children in this country, especially baby boomers with aging parents.
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| Carrie Rosema / The Press-Enterprise |
Ruth Walker has her parents, Celia, 82,
and Bernard Herrmann, 86, living with
her family in Riverside, including her
daughter, Jennifer, 6, and their dog. |
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Although there are no statistics on how many parents are flocking to their kids’ nests, Cesaria Hernandez and her husband, Duane Minard, are part of this phenomenon. According to the 2000 census, 4 percent of U.S. households (3.9 million) now have three or more generations living together, and a third of those include parents who have invited grandparents to move in.
Lives Change
Dealing with her parents’ numerous medical problems, their guilt feelings and mood swings can leave Walker exhausted as well as hoarse from yelling because of their deafness. “It’s a roller coaster ride,” she said.
Her parents, Celia and Bernard Herrmann, are financially secure and have developed a routine. Celia fixes breakfast for the couple and Meals on Wheels delivers lunch. The Herrmanns listen under headphones in a separate room to the muted TV to reduce the noise level. Twice a week Walker accompanies her dad to a 24 Hour Fitness. He told the manager his goals were “just to stay alive,” she said with a laugh.
Lynn Pronio, of Corona, realizes that responsibility for her 94-year-old mother has dramatically changed both of their lives.
“I’m not resentful,” said Pronio, 58, who has sharply scaled back her career with a church ministry since her mom moved in three yeas ago. “I don’t know how long this season is going to be, but she’s with us now and I’m her sole caregiver.”
Initially the move shook up her mother’s world. Until Dorothy Davidson fell, she’d lived alone in Long Beach, playing bridge, volunteering at a hospital, visiting friends.
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Garon Friend, 14, left; grandmother
Louise Hernandez; and Kayle Friend, 16;
and triplets Roberto, Rafael and
Emilia Hernandez share laughter
before prayer time. |
“She’s no longer the strong, independent woman she was,” said Pronio. “She can’t talk on the phone because she’s hard of hearing. But she’s very accepting of the situation now.”
One of the biggest problems is caregiver burnout, said Kristine Wagner, a clinical psychologist in Temecula.
“To take care of others, first, you have to take care of yourself.” She suggests respite care or adult day-care centers to prevent meltdown and alleviate overload.
Linda Sperlich learned first-hand about the demand for relief after looking after hers and her husband’s parents before they died within a 14-month period. In January 2004, she launched a day program in Riverside called Together Time, licensed for six adults older than 18, particularly targeting the elderly.
“There’s a huge need for them to get out and socialize,” said Sperlich, 58. She provides breakfast, lunch, snacks, games, arts, crafts, movies, grooming, music, shopping and cultural trips, picnics and light exercises from 7 a.m. to 5:30 p.m. Monday through Friday.
Since her mother-in-law moved in last March, Laura Ramirez, 35, of Corona, said their relationship has improved since the early years of her marriage. “Although sometimes I’m exhausted, she’s content with us. As our parents get older, the last thing I’d want to do is put them in a convalescent home.”
Reach Laurie Lucas at llucas@PE.com or 951-368-9569.
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NEW STUDY FINDS FAMILY CAREGIVERS OF STROKE PATIENTS POORLY PREPARED FOR ENDING OF SHORT-TERM HOME CARE SERVICES
Policymakers Urged to Include Family Support in Community CareNEW YORK, NEW YORK, June 19, 2006—In the first-ever study following family caregivers of stroke and brain injury patients through their initial experiences with formal home care services, the termination of services, and for an average of nine months thereafter, researchers at the United Hospital Fund have determined that unpaid family caregivers provide substantial amounts of care but receive inadequate support from health care providers.
Stroke patients discharged from hospitals, typically a week after the incident, require an enormous amount of care at home. While most are eligible for some services from home care agencies, family caregivers shoulder three-quarters of the care responsibilities even when agency services are being delivered. And when these services end, typically after six or seven weeks, it is family members who, ready or not, must take over or seek other sources of assistance. Between one-third and one-half of family caregivers reported being inadequately prepared for agency home care services to end. And, at all stages, family caregivers experienced significant isolation, anxiety, and depression.
"This study demonstrates the gap between the needs of caregivers of patients with chronic conditions and the services that are provided under a system based on short-term, acute care rehabilitation," says Carol Levine, lead researcher of the study and director of the Fund's Families and Health Care Project. "The home care agencies are doing their job; they are providing the services policymakers have decided to pay for. But, as we move toward even shorter lengths of hospital stay and toward home- and-community-based services, policymakers and practitioners should view our findings with concern. Without adequate support for family caregivers, no system of chronic care in the community can function."
Published in June in The Milbank Quarterly, the study, titled "‘This Case Is Closed': Family Caregivers and the Termination of Home Health Care Services for Stroke Patients," enrolled and periodically interviewed a sample of 99 New York City family caregivers taking care of stroke or brain injury patients following their discharge from a hospital or short-term nursing home stay. Caregivers were recruited through three collaborating Certified Home Health Agencies and represented a geographically and ethnically diverse sample.
Interviews were conducted at three points in time: as soon as possible after formal home care services began, as soon as possible after the case was closed, and approximately nine months later. Some caregivers participated in a fourth, in-depth interview. In other arms of the study, Fund researchers conducted focus groups with home care clinicians, such as nurses and physical therapists, and with home care aides to gain their perspectives on case closings. Many of the clinicians and aides also expressed frustration with the system. While all of the clinicians pointed out that they told the families that services would be short-term, they also acknowledged that this message was often lost on caregivers who were dealing with major life changes.
The study demonstrates that current home care policies are falling dramatically short of family needs. Most insurance (Medicare, Medicaid, private insurance) covers the delivery of skilled nursing and therapy services after an episode such as a stroke for a limited duration of approximately six weeks. In this study, the median duration of home health care services was 40 days, and the mean was 54.2 days, even though stroke patients often require many more months of rehabilitative care before they recover the full level of possible functioning.
Medicare and commercial insurers do not cover chronic, long-term care services at home—services that assist patients and their caregivers with such tasks as bathing, toileting, and meal preparation. Only the Medicaid program offers some assistance with these types of tasks. Though some families opt to pay out-of-pocket costs for such services, others cannot afford to do so.
"This study gives us insights into the experiences of family caregivers from their perspective," says Jim Tallon, president of the United Hospital Fund. "And what the study tells us is that caregivers are willing to take on care responsibilities, but they desperately need more assistance in order to provide care to very impaired patients while keeping themselves healthy and strong."
"Regardless of their insurance status, family caregivers generally increased their hours of care when the agency case was closed," said Steven M. Albert, Ph.D., a gerontological researcher at the University of Pittsburgh and a co-author of the study. "At nine months they were providing nearly the same amount of care needed when the case was opened. This suggests both a period of instability at the time of the case closing and an ongoing need for assistance for a very impaired population."
Other highlights of the study include:
• Almost three-quarters of the family caregivers were women; about half were spouses; their mean age was 57.
• Forty-one percent of the caregivers were working full- or part-time, and 19 percent had stopped working because of their caregiving responsibilities.
• Family caregivers provided, on average, 32 hours of care a week while they were receiving formal home health care services, which provided, on average, 11 hours a week of support.
• Social workers, who may have been able to provide assistance to families, were used infrequently and were mainly brought in when there was a problem closing the case.
• Speech therapy was seldom provided, even though stroke patients often have difficulty recovering language skills.
• The patient's type of insurance coverage did influence care and case closings. While their cases were open, Medicaid patients were less likely to receive occupational therapy services. Patients with Medicaid, who were older and more likely to be from a minority group, had longer lengths of service than did those with Medicare or private insurance.
• Nearly 40 percent of family caregivers reported that they learned about the case closing (i.e., termination of formal home care services) only when a therapist, nurse, or home care aide informed them. "The physical therapist gave notice on Thursday that Friday was going to be the last visit," was a frequent comment.
• Family caregivers reported that they did not understand how the level of home care services was determined, who was paying for what, which agencies supplied the different kinds of workers, and what they should expect from each. None of the caregivers reported a discharge process that addressed their ongoing needs for further training and provided referrals to other supportive services. • Not surprisingly, the total amount of formal home care and family care was higher for patients with mobility impairments. The family time commitment for patients with impairments was striking, however. Family care rose from 39 hours a week during formal home care, to 66 hours after the case was closed, to 53 hours at 10 months after formal services ended.
• While 68 percent of family caregivers said they felt "psychologically ready" for the end of home care services, the burden levels reported by caregivers went up during this transition—with the greatest increases reported by those providing care for more disabled recipients.
Based on the study, the researchers offer both policy and practice recommendations.
Policy recommendations:
1. Social workers, already part of the home care team, should be used more extensively and frequently, particularly when it is clear that family caregivers will be responsible for the patient's long-term care needs. There are now no financial incentives to do so, and disincentives not to provide social work services persist.
2. Notices of recipients' rights to appeal the denial or reduction of home care services under Medicare should include help in the transition from formal services to family care.
3. Programs that count on families should include support for family caregivers, such as information, training, respite, and financial assistance, where necessary.
Practice recommendations:
1. Certified home health agencies should spend more time educating family caregivers so that they will better understand and more easily navigate the home care system.
2. Family caregivers' needs, as well as those of the patient, should be considered in the home care plan and discharge plan.
3. Home care workers should receive additional training in communicating more effectively with family caregivers, teaching family caregivers methods of care, when needed, and offering necessary information.
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Tags: medicaid, medicare
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