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Tag: Caregivers

  • VA program offers older veterans care in private homes

    VA program offers older veterans care in private homes

    Patricia Kime reports for Kaiser Health News on foster homes for older veterans. At these private homes, licensed caregivers attend to their needs and often treat them like family. These private homes are part of an effort of the Veteran’s Administration to move vets out of long-term nursing home care.

    The Medical Foster Home program is a VA initiative designed to improve the quality of life for vets with physical or mental disabilities. It moves these vets out of nursing homes and into private homes. It offers them the opportunity to live in the community. It provides a private or semi-private room and board, 24-hour one-on-one attention and personal care. It also gives vets some flexibility in their daily activities.

    Vets in the program must use the VA’s Home-Based Primary Care Program. One Brookings study showed that the care Vets receive in these homes is not only less expensive than nursing home care but far better. They have significantly fewer hospital admissions and shorter hospital stays when they are admitted.

    Today, 1,000 veterans in 42 states avail themselves of this program. They must be diagnosed with a serious chronic disabling condition that requires a high level of care, including care coordination and access to VA services. Given the amount of care these vets need, the average $2,300 monthly cost to veterans is low relative to most home care environments. Costs range from $1,500 to $3,000 a month for room and board, depending on location. The government subsidizes the cost of care and still saves about $10,000 a month on what it would have spent on nursing home care.

    The VA would like to increase the size of the program. But, a licensed caregiver can care for no more than three veterans. And, the VA has strict requirements for homes and caregivers, which slows its growth. For example, each foster home must be licensed by the state as an assisted living facility and must agree to VA and state inspections, as well as inspections by nutritionists, pharmacists and nurses.

    Licensed caregivers must pass a background check and complete 80 hours of training. They must take another 20 hours of training annually. They must also permit the VA to make unscheduled home visits. They must be certified in first aid, CPR and administration of medications.

    Today there are some 120 Veterans Administration facilities and 700 licensed caregivers participating in the program.

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  • CARE Act assists family caregivers

    CARE Act assists family caregivers

    About seven in ten older adults need long-term care at some point. In many cases, it is a family member who provides that care to help them remain in their homes as long as possible and stay out of nursing homes and other institutions. The CARE (Caregiver Advise, Record, Enable) Act is designed to assist family caregivers, by helping to ensure a smooth transition when the people they care for are moving between home and hospital.

    Family caregivers provide a wide range of caregiving services, from simple non-health related chores such as cleaning, cooking, and transportation to medical services such as medication management, wound care, injections and operating medical equipment. AARP reports that about 20 million family caregivers in the US perform these medical services for the people they love. It is important for family caregivers to know when the people they love are leaving the hospital and what types of care they will need when they return home.

    In states that have implemented the CARE Act, hospitals must include the names of family caregivers in patients’ medical records. Hospitals also must alert family caregivers when their loved ones are about to leave the hospital. And, hospitals must provide family caregivers with information on how to perform needed medical services after their loved ones return home from the hospital.

    The CARE Act is law in 36 states, as well as the District of Columbia, Puerto Rico, and the US Virgin Islands. States that have passed the CARE Act are: Alaska, Arkansas, California, Colorado, Connecticut , Delaware, Hawaii, Illinois, Indiana, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Montana, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, New York, Ohio, Oklahoma, Oregon, Pennslyvania, Rhode Island, Texas, Utah, Virginia, Washington, West Virginia, Wyoming.

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  • Caregiving for someone with serious mental Illness: Secure your own oxygen mask first

    Caregiving for someone with serious mental Illness: Secure your own oxygen mask first

    As a psychiatrist, I know how challenging it can be to ensure that individuals with serious mental illness get the right mental health and medical care, not to mention have access to basics like housing, food, and income. And as a family member of someone with mental illness, I know firsthand the toll it can take on loved ones and caregivers.

    The healthcare system can be bewildering. Navigating health insurance, coordinating between multiple specialists, understanding complex and sometimes conflicting medical advice, and getting timely answers to questions can be dizzying for anyone. Add symptoms of mental illness to this and it is often downright impossible.

    Financially affording mental health care adds another layer of stress. Federal law notwithstanding, many private insurance plans have some ways to go before they can say they provide true parity in mental health coverage. Many people with mental illness are unable to work, which puts employment-based private insurance out of their reach. They therefore must depend on public insurance such as Medicaid and/or Medicare.

    Some types of intensive mental health services (e.g., Assertive Community Treatment teams) are only paid for by Medicaid. However, paradoxically, the people who need public insurance (and other public benefits, like Social Security Disability Insurance) are often the least capable of successfully completing the onerous application process. So, many individuals with serious mental illness who are lucky enough to have supportive family members and close friends often must turn to them for help.

    But helping a loved one with serious mental illness is invariably stressful. First, navigating the healthcare and public benefits systems is complicated, frustrating, and often demoralizing. It can sometimes feel like the entire system is designed to avoid helping the people who need it most. Even as a physician and mental health professional with multiple nurses in my family, I struggled with this when trying to support my own loved one with mental illness.

    Second, the symptoms of the mental illness itself can make caregivers anxious, fearful, angry, or depressed. Family members may spend a lot of the time worrying that their loved one may self-harm or be unable to care for themselves. Caregivers may occasionally worry for their own safety during times of crisis. Loved ones may need to take people with serious mental illness into their homes and feel deprived of privacy or quiet space. They may be juggling many other responsibilities alongside caring for an individual with serious mental illness and have no time for self-care or relaxation.

    Repeatedly witnessing the suffering that mental illness can cause may drag their mood down over time, leading to emotional distress and hopelessness. The list goes on, and for these reasons, family caregivers tend to have worse mental and physical health, and may be at increased risk for suicide. Especially for those with a high level of strain or stress, caregivers are even more likely to die early.

    So, what are caregivers to do? How do we provide the help that our loved ones may so urgently need while maintaining our own mental and physical health? There are no simple answers or easy fixes to this dilemma, but several “best practices” might help. First, do not go it alone. Frequently ask other family members or friends for help or even to take over the primary caregiving responsibility for a while. Consider joining a support group for family members of people with mental illness. The National Alliance on Mental Illness (NAMI) is a wonderful organization; find your local chapter.

    Second, hold treatment providers accountable. Their jobs are stressful, and they are operating under serious resource constraints. You can empathize with this, but remember that it is still their job to do whatever they can to help people with mental illness achieve full recovery, and sometimes family members must remind them of this and focus their attention on important problems.

    Third, look for expert advice outside of the healthcare system. For instance, consulting an attorney to help sort out issues related to benefits, housing, or guardianship could save enormous time, energy, and frustration. Do not assume you cannot afford it; many communities have non-profit agencies that provide this type of assistance on a sliding scale fee or pro bono basis and it is likely worth a little research.

    Fourth, set limits. Realize that recovery from serious mental illness is more like a marathon than a sprint, that setbacks are part of the process, and that you need to reserve your energy if you are to make it to the finish line of the caregiving race. You cannot do it all, you can’t recover for your loved one, and you can’t live their life for them. If you try to do everything for someone and/or be instantly available for them one hundred percent of the time, you will burn out and be less able to help them when truly necessary. Possibly worse, you risk sapping their ability and confidence to care for themselves and (re-)attain independence.

    So, take time away from caregiving to rest, meet your own emotional and physical needs, socialize with friends who are not connected to your caregiving role, and enjoy your own life. Your loved one will likely be just fine, and even if they aren’t, it’s not your fault for taking a little time away.

    Finally, if you are suffering from symptoms of anxiety or depression, be sure to let your healthcare provider know and seek out your own mental health treatment if necessary. Remember that asking for help is a sign of strength and resilience; a good model for your loved one with mental illness and a lifeline for yourself.

    Here’s more from Just Care:

  • Caring for LGBT older adults

    Caring for LGBT older adults

    The Administration on Aging estimates that there are 1.5 million LGBT older adults in the United States and that the number will double by the year 2030. Combined with a growing aging population, it’s clear that more medical research must be dedicated to identifying and addressing health disparities in the LGBT community.

    In the meantime, it’s important for older adults, their families and caregivers to understand the challenges that LGBT older adults face and work together to find ways to meet their diverse needs. Talking to your doctor or nurse practitioner is always the first step to addressing any health-related needs. Below you’ll find a few points that might be worth asking about at your next visit.

    1. Social Determinants — Many social factors contribute to health outcomes over the course of a patient’s life, like housing, economic status, education, transportation and health care; these factors are called social determinants, and affect everyone differently. According to Healthy People 2020, many of these determinants are often tied to discrimination against the LGBT community, including a shortage of social programs, health care professionals, and legal protections for LGBT people. The scope of these determinants are changing as the landscape of American social justice evolves, so it’s important to discuss any needs or concerns with your provider.
    2. Mental Health Care — Social isolation is a high risk for LGBT adults, because social circles and engagement tend to decrease as people age. Though many adults report that they feel more socially open and accepted in recent years because of American cultural and political shifts to protect the LGBT community, it’s important to address how social stigmas can affect people’s mental health. Finding empowering communities is critical for the wellbeing of all aging adults, but especially those who have or currently feel discriminated against.
    3. Health Disparities — A study in the American Journal of Public Health showed that LGBT adults are at higher risk for chronic conditions and STDs, as well as less likely to seek health screenings in the early stages of a developing condition. Access to care and improved health literacy can encourage LGBT older adults to take charge of their health outcomes, but caregivers, family members and medical providers have to take the time to empower them to do so. Answering questions, listening intently and including people in their health decisions are all ways to improve health literacy long-term.
    4. Cultural Competency — Many states have legislation that requires cultural competency training and regulations for all medical providers, in order to ensure quality care for all patients in the LGBT community. The Affordable Care Act followed suit in 2016 when the Department of Health and Human Services established federal anti-discrimination provisions that protect LGBT patients when seeking health care and services.

    In 2011, the Institute of Medicine released a report that said, “while LGBT populations are often seen as a single entity for research and advocacy purposes, each [lesbian, gay, transgender, bisexual] is a distinct population group with its own specific health needs.” Addressing these needs are a critical part of ensuring that LGBT adults age happily and healthfully.

  • Stress may increase risk of dementia for caregivers

    Stress may increase risk of dementia for caregivers

    A Johns Hopkins University, Utah State University and Duke University study found that people caring for spouses with dementia are six times more likely to get dementia than people caring for spouses who do not have dementia. The researchers surmise that caregiver stress may increase the risk of dementia for the caregiver spouses. If so, identifying ways to ease the stress becomes all the more critical.

    The caregiver study was conducted on 1,221 older married couples (2,242 people) over the course of 12 years. Researchers found increased memory loss among caregivers whose spouses had dementia. According to Maria Norton, one of the researchers, “We know that the declines in memory we saw were real and persistent, not just a point in time where they weren’t performing well on tests.”

    If the cause of the increased memory loss is indeed stress related to caring for loved ones with Alzheimer’s disease or another dementia, the question becomes how to alleviate that stress. As Julie Potyraj reported in Just Care, “caregivers are three times more likely to be highly vulnerable to health issues than non-caregivers. Compared to individuals who are not caring for an older adult, caregivers experience higher rates of physical illness including chronic pain and compromised immune systems.”

    What are the signs of stress for caregivers of people with Alzheimer’s disease? Denial that loved ones are losing their memories. Anger at loved ones for not being able to do what they once could do. Social isolation. Anxiety about what will happen over time and depression that makes it hard to cope. Loss of energy, inability to sleep and fatigue.

    To ease stress, caregivers should have a health care buddy–a friend or family member they feel comfortable with–to talk to and support them. Caregivers should also build self-care into routines, stay connected to friends and social networks, and be active. A support group of people who share and can relate to what caregivers area going through can also be helpful.

    Here’s more from Just Care:

  • How can we rely on paid caregivers?

    How can we rely on paid caregivers?

    Many older adults who want to age in their communities must rely on paid caregivers to provide long-term care services. But, the two million home care workers in the U.S. have little financial security and therefore too often cannot be relied upon. Moreover, there is little data on how well these paid caregivers deliver home care.

    Part of the issue is that traditionally home care workers have been paid precious little. They tend to work for wages that put them below the poverty level and without any benefits. Their hourly wage is about $10 an hour and can be as little as $8. Recently, with support from the SEIU, they have been organizing for fair wages and benefits in the Fight for $15.

    According to Kaiser Health News, as a result of strong organizing efforts and with support from President Barack Obama, several hundred thousand home care workers in a dozen states will finally see a significant pay raise over the next few years, along with benefits. The 500,000 of them who have joined the SEIU and other unions will be able to get sick time, health and retirement benefits.

    These increases  are coming none too soon. With 10,000 people turning 65 every day, the United States is experiencing a huge demand for paid caregivers. So, it’s important that people see home care as a desirable job.

    However, the problem remains that we have no sense of how well individual home care workers meet the needs of older adults. These caregivers bathe, feed, dress and otherwise help older adults with activities of daily living. But, no one is overseeing or tracking them at the state or federal levels.

    Moreover, home care workers often have no experience. And, with low wages, they tend to move in and out of the profession. The industry has extremely low retention, with an annual turnover rate of about 50 percent. High turnover can jeopardize the health of older adults who cannot rely on the same paid caregivers over time. Background checks for home care workers may not be required. And, they are generally not trained on how to work with patients with dementia or depression. Many home care agencies do not supervise or support their workers.

    To make matters worse, there is very little government regulation of the home care industry. Home care agencies often operate with little oversight and may not be serving the interests of their workers or their clients. Recently, six Medicaid agencies in DC were shut down after they were found to be committing Medicaid fraud. The agency shut-downs left their home care workers on the job without pay.

    Here’s more from Just Care:

  • As population ages, need for more caregivers

    As population ages, need for more caregivers

    Today, about one in 12 people over 20, nearly 18 million people, provide care for an older family member with health issues. A new report, Families Caring for an Aging America, by the National Academy of Sciences, Engineering and Medicine, finds that by 2030, as our population ages, there will be a need for more caregivers. Will we have systems in place to support these caregivers and permit them to continue to meet the needs of older adults?

    By 2030, more than 70 million Americans will be over 65– about 20 percent of the population.  And, they will continue to need help with long-term care services and supports. But, the pool of  caregivers is shrinking as an increasing number of older adults are childless, single or live far from their children. Moreover, more women than ever are working, depend on that income, and do not have the flexibility to juggle work, kids, and caregiving for the older adults in their lives.

    While many family caregivers of older adults report tremendous benefits from caregiving, they are also more prone to depression, anxiety and stress than non-family caregivers. They are more likely to suffer from chronic conditions. And, they are prone to economic hardship. Half of all caregivers spend more than five years delivering care to an older adult. For caregivers over 50, lost work income and benefits are estimated to be $303,880, and that does not include lower Social Security benefits.

    The report assesses the needs of family caregivers looking after older adults and how well they are supported today. It further considers how new policies could better serve these family caregivers.

    Sixteen years ago, Congress created the National Family Caregiver Support Program, under the Administration on Aging, which explicitly addresses the needs of people caring for older adults. The NFCSP provides information, assistance in securing services, individual counseling for caregivers as well as education and support groups, respite services and supplemental services. All caregivers over 60 are eligible as well as caregivers caring for people over 60. However, Congress only appropriated $150 million for services

    What’s crystal clear is that Congress needs to allocate more resources to better support caregivers and older adults in their communities. New programs and services must be developed that are accessible and affordable. You can support family caregivers by clicking here.

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  • Coping strategies for people with dementia

    Coping strategies for people with dementia

    In the final part of a four-part series on caregiving and dementia, Julie Potyraj, community manager for the online master of public health at The George Washington University, explores multiple coping strategies for people with dementia. 

    Dementia brings about an array of physical, cognitive, and emotional changes. Each person will find his or her own unique way of coping as the disease progresses through its various stages. Below are several types of coping strategies that can help people with dementia maintain a good quality of life for as long as possible.

    Practical strategies. The cognitive decline associated with Alzheimer’s disease and dementia can make it difficult for a person to store and recall information. Memory problems can be addressed by using sticky notes, calendars, and other tools to remind the person of certain tasks like taking medication. Assistive technology devices like smartphones are also helpful. Establishing a regular routine can make it easier for a person with dementia to recall patterns of usual activity during the day.

    Health strategies. Good nutrition can’t cure dementia, but it can lessen the intensity of some symptoms while contributing to an overall feeling of well-being. People with dementia should focus on eating whole grains, fruits and vegetables, and lean protein; limit sugar, salt, and saturated fat intake; and drink plenty of water. Regular exercise is also beneficial.

    Emotional strategies. People with dementia often go through a grieving process in which they mourn the loss of the person they once were. Using humor and positivity and practicing living “in the moment” can help people weather the dementia storm.

    Social strategies. Staying socially engaged can help people with dementia–as it helps older adults more generally–maintain their brain vitality. In fact, studies have shown that involvement in group activities and strong personal relationships can have a protective effect against the disease.

    While caring for a loved one with dementia, caregivers must also consider developing their own coping strategies in order to prevent burnout. These might include joining a support group, practicing meditation or yoga, eating well, and getting plenty of sleep. People who look after someone with dementia should also reach out to friends, family, and volunteer organizations to ask for help with the daily stress of caregiving.

    Here’s more from Just Care:

  • How to communicate with a person with dementia

    How to communicate with a person with dementia

    In part two of a four-part series on caregiving and dementia, Julie Potyraj, community manager for the online master of public health at The George Washington University, explores strategies that caregivers can utilize while communicating with someone who has dementia.

    Alzheimer’s disease and other types of dementia can negatively affect a person’s ability to communicate effectively, particularly during the later stages of the disease. People may begin to speak less frequently and, when they do speak, they may lose their train of thought or have difficulty organizing words in a logical way. Some people may revert back to their native language or use “made up” words to describe familiar objects.

    Communicating with someone who has dementia requires skill, patience, and understanding. Below are some strategies from the Alzheimer’s Society that caregivers can employ to keep exchanges flowing smoothly.

    • Speak slowly and use simple words and sentences. This will make it easier for a person with dementia to understand what you are saying.
    • Maintain eye contact. This helps the person with dementia stay focused on you and what you’re saying.
    • Offer continual reassurance. Be comforting. Tell the individual that it’s okay to take their time in trying to explain their thoughts or emotions.
    • Avoid overcorrecting. Do not criticize or always attempt to correct what the person says. Instead, try repeating their words back to help them clarify their thoughts. Avoid arguing.
    • Encourage body language. When words are ineffective in relaying the person’s message, ask them to gesture with their hands.
    • Limit surrounding distractions. Turn off the TV or move to a quieter area before attempting to communicate or understand what the person is saying.
    • Do not stand too close. Standing too close to someone with dementia may make the person feel overwhelmed and intimidated.
    • Look for—and focus on—the emotions at play. In some cases, the feelings being expressed are more significant than the words being used. Try to identify what the person is feeling by paying attention to tone of voice and gestures.

    Lastly, be aware of your own attitude and body language and how they affect the individual with dementia. Be sure to maintain a relaxed demeanor and friendly facial expressions. When you do, the person with dementia will feel more at ease.

    Here’s more from Just Care:

  • Caregiving: Understanding the emotional impact of dementia

    Caregiving: Understanding the emotional impact of dementia

    In part one of a four-part series on caregiving and dementia, Julie Potyraj, community manager for the online master of public health at The George Washington University, looks into the emotional symptoms many dementia patients experience and what caregivers can do to help.

    It’s understood that dementia can impair a person’s ability to remember, communicate, think, and reason. But beyond the practical aspects of the disease, dementia has emotional consequences as well. Below are some common behavioral and psychiatric symptoms that can occur in many dementia patients.

    Depression or anxiety after diagnosis. A dementia or Alzheimer’s disease diagnosis can trigger intense emotions in many people. The person diagnosed may experience feelings ranging from shock and disbelief to grief and fear. For people with lasting feelings of sadness or anxiety, talk therapy can be helpful, or, in some cases, medication.

    Changes in emotional responses. People with dementia may have less control over how they’re feeling and their emotional expressions. They may have volatile mood swings, irritability, or become inappropriately agitated in certain situations. Some people may appear to be distant or disinterested in what’s going on around them.

    Anger and agitation. In later stages of the disease, a person may have physical or emotional outbursts, visible emotional distress, or periods of agitation. Feelings of anger can be exacerbated by new places and people, loud noise, or a lot of activity.

    Lower self-esteem. People with dementia may feel “out of control” and lose confidence in themselves or their ability to perform basic functions. They may also feel the impact of the social stigma of dementia and perceive a real or imagined difference in the way people treat them. All of this can have a devastating effect on someone’s sense of self-worth.

    What Caregivers Can Do

    Fortunately, there are things caregivers can do to help lessen the brunt of emotional changes in their loved one with dementia. These include:

    • Validating the patient’s worries instead of dismissing them.
    • Giving the person adequate time to calm down after an outburst.
    • Trying not to take emotional responses personally.
    • Employing a healthy sense of humor, when appropriate.

    Caregivers are also encouraged to involve their loved one in everyday tasks—for example, asking what they would like for dinner. This can give the patient a sense of control during a time when they feel they have no say in what’s happening around them. Empathy and patience go a long way in helping to preserve the dignity of those struggling with dementia.

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