A report by The Audit Office informs that most people in the United Kingdom are dying in hospital – even though the majority would prefer to die at home.

The Audit Office explains that of the half-a-million people who die each year in England, over 66% are over the age of 75. Most deaths take place in an acute hospital, usually after a period of chronic illness, such as cancer, stroke, heart disease, neurological disease, dementia or heart disease.

Whether a patient gets his/her wish – dying at home – depends greatly on age, geographical location and most significantly, his/her condition, the report states.

The aim of ‘end of life care’ is to support the patient who is approaching the end of his/her life as well as possible. A large number and a wide range of staff are involved in end of life care – doctors, nurses, allied health professionals and social workers. According to the report, the exact number of people involved in this type of care is unknown.

Within the area of end of life care is palliative care. Palliative care is delivered by health and social care staff who are specialized in pain management as well as other symptoms – they also provide psychological, social and spiritual support.

The report stresses that the provision of end of life care services has become progressively more complex. As people are living longer, the incidence of frailty and multiple conditions in elderly patients grows. Consequently, those who are nearing death need a combination of health and social care services provided in the community, hospitals, care homes, and/or hospices. Family members, volunteers, and close friends also provide care.

In 2006-2007 PCTs (primary care trusts) spent approximately £245 million in England on specialist palliative care services. According to the Department of Health, the total annual overall cost of end of life care to the National Health Service (NHS) and social care services is measured in billions of pounds. The report estimates that the yearly cost to the NHS and social care services of providing care for cancer patients alone during their last 12 months of life is £1.8 billion (27% of deaths).

According to the report, the Department of Health accepts that end of life care within the NHS and social care services has not had the priority it should have – the Department emphasises that over recent years it has been working on addressing this.

Following a two-year consultation, the Department of Health published its End of Life Care Strategy, aimed at improving the provision of care for all adults who are approaching the end of their lives – this includes support for their loved ones and carers. The End of Life Care Strategy focuses on:

– better provision of community services by, e.g. making rapid response community nursing services available everywhere 24 hours a day seven days a week, and improving coordination of care between local authorities and PCTs;

– equipping health and social care staff at all levels with the necessary skills to communicate with, and deliver care to people approaching the end of life, and their carers; and

– developing specialist palliative care outreach services by encouraging PCTs and hospices to work together to provide appropriate support to all adults in the community, regardless of their condition.

The Department of Health believes that the implementation of its End of Life Care Strategy will reduce the number of improper hospital admissions and allow more patients to end their days in the place of their choice. An extra £286 million over 2009-10 and 2010-11 has been earmarked for this purpose.

According to research, between 56% and 74% of people would prefer to die at home. However, this proportion falls when death looms closer and people wish for more extensive support, such as from a hospice. According to 2006 mortality statistics, only 35% of people die at home or in a care home.

58% of people die in hospital – this is a national average which can vary from 46% to 77%, depending on which part of the country.

– Cancer patients are more likely to die at home
– Dementia patients mostly die in care homes
– Heart disease and pulmonary disease patients mostly die in hospital

There are many people who die in hospital for clinical reasons, many of whom chose hospital as their preferred place of care.

The report informs that a lack of prompt access to services in the community raises the number of people who are approaching the end of their life being unnecessarily hospitalized. “The absence of 24 hour response services and timely access to advice and medication leads to unplanned admissions. In addition, information on patients is not always captured or shared effectively between the different agencies involved in delivering care. This can lead to Do Not Attempt Resuscitation orders not being known or recognised to providers such as out of hours GPs and the ambulance service, resulting in inappropriate admissions to hospitals,” the report states.

According to the report, the proportion of care home residents who end up dying in hospital could be significantly reduced. One quarter of care home residents currently die in a hospital – these proportions vary considerably between care homes, ranging from 0% to 100%.

The report mentions that one Primary Care Trust could have increased the number of residents dying in care homes from 61% to 80% if there had been more support and advice provided to those care homes.

Independent and NHS Hospices – “Independent hospices have an important role in the delivery of end of life care services, both in inpatient care and increasingly in day care and in services in care homes and peoples’ homes. Independent hospices currently provide around 2,150 inpatient beds, compared to 450 provided by NHS hospices. Although traditionally focused on cancer, hospices are also increasingly offering services to people with other conditions. Whilst the proportion of non-cancer patients receiving hospice services is low, it is growing,” the report informs.

According to the report, the National Health Services and Social Care Services are not meeting even the basic needs of many people approaching the end of their life. It quotes a Healthcare Commission study which indicated that people who are approaching the end of their life “are not always afforded the dignity and respect they deserve”. The report says it also identified a similar picture – standard of hospital care and social service provision was disappointing, and care plans for patients had not been drawn up and agreed, causing unnecessary stress for people during the end of their life. This sad state of affairs also causes unnecessary stress for loved ones and those caring for a dying person.

The UK needs a new system to pay for long-term care for older people, which combines a clear-cut entitlement to care and support with a sharing of costs between individuals and the state. This was the conclusion, published recently (The Future of Care Funding: Time for a change1), of a nine-month consultation initiative involving over 700 people with experience of the long-term care system as users, carers, providers or researchers.

The Caring Choices initiative was run by a coalition of 15 organisations with an interest in the long-term care system, led by the King’s Fund, Joseph Rowntree Foundation, Help the Aged and Age Concern2. Born out of widespread and growing concern that the current system is unsustainable3, it encouraged and facilitated debate across England and Scotland through a series of events and an interactive website.

Five areas of broad agreement emerged from the events and a survey completed by event participants and web visitors:

The present system of funding long-term care is not fit for purpose. People receiving and providing care alike thought the system was unclear and unfair. In particular they disliked the ‘postcode lottery’ giving very different entitlements to people in different areas and the high degree of means-testing that seems to penalise people who have made provision for their old age.

More money will be required to meet growing need. Between 2002 and 2026, the number of older people requiring care is likely to rise by 50 per cent, and costs per head will also rise. Unless the government increases its own contribution, the extra costs will fall on care users. Already today, some people needing care are not getting the help they need, as local authorities short of cash focus only on those with the most critical conditions.

There should be a universal element of long-term care funding. Nine in ten participants supported a system where everyone gets some contribution from the state. Many participants argued for a baseline entitlement available to everyone with care needs, regardless of their income and wealth.

Funding of long-term care should be shared between the state and individuals. Only one in five participants believed that personal care should be funded 100 per cent by the state. Most favoured a system of ‘co-payments’ whereby a care package is paid for mainly by the state but with a fixed percentage contribution from the user.

Better support for unpaid carers is crucial. There was strong resentment about the lack of support for unpaid family carers. Carers and care users emphasised that any effective settlement for long-term care funding needs to involve more generous funding of items such as respite care and Carer’s Allowance.

Other areas of debate were much more contested, generating different views on the best options for the future. These included how far state support should be limited to ‘personal’ care (help with bathing, eating, going to the toilet etc) as opposed to wider social care or measures that could prevent or slow down dependency; the role of benefits such as Attendance Allowance; and how far government should provide help to individuals to enable them to pay their share of care costs, through schemes such as long-term care insurance and equity release. These issues require careful consideration and, ultimately, difficult decisions will have to be made.

Caring Choices does not claim to be a representative survey of public opinion, but it does provide a valuable indication of the thinking of people with a stake in the care system. The conclusions will be fed into the forthcoming government consultation and Green Paper on the funding of adult social care in England, announced in last year’s Comprehensive Spending Review4 which acknowledged that major reforms to care funding are likely to be needed.

Niall Dickson, Chief Executive of the King’s Fund, said:

‘We are at a critical point – in what could be the most important policy shift in this area for many years, the government accepted in the recent Comprehensive Spending Review that the current long-term care system needs to be reformed. Opposition politicians appear to be of a similar view. I hope the forthcoming government consultation will draw on the Caring Choices initiative – and the major King’s Fund and Joseph Rowntree reviews before it – to help us finally achieve the fair, effective and affordable system that is so necessary.’

Julia Unwin, Director of the Joseph Rowntree Foundation, said:

‘This initiative has produced important new evidence on what kind of funding system will gain the confidence of those most closely involved with long-term care. It shows that people yearn for greater clarity about their entitlements: whichever system we have should do what it says on the tin. At present many older people and carers feel unsupported by a system that too often seems to be working against them, rather than giving them essential support at a time of their life when they are at their most vulnerable.’

Paul Cann, Director of Policy for Help the Aged, said:

‘The sad reality is that our care system can’t be relied on to care. Far too often when faced with a life-changing decision after a sudden crisis, people find themselves in the dark with limited choice. Inadequate funding means quality is often unacceptably low. The challenge for government is a big one – but the steps along the way are achievable if the social care of older people is made a top priority. This issue must be brought into the open and treated with the severity it deserves.’

Age Concern England, Director General Gordon Lishman said:

‘The way older people and their families are treated by the care system is a national disgrace. Most people don’t expect the government to pay for everything but they do expect it to make a fairer contribution. More money – from whatever source – will not on its own deliver better results. Older people and their families urgently need a reformed care system that provides good quality support when and where it is required.’

Notes

1. Download the full report: The future of care funding: Time for a change

2. Caring Choices core partners:

- Age Concern
- Help the Aged
- Joseph Rowntree Foundation
- King’s Fund

Partners:

- ADASS
- Association of British Insurers
- Alzheimer’s Society
- Carers UK
- Counsel and Care
- English Community Care Association
- Local Government Association
- IndependentAge
- The NHS Confederation
- Royal College of Nursing
- Social Care Institute for Excellence

3. The extent of the problem was set out in two major independent reviews published in 2006: Securing Good Care for Older People: Taking a long-term view by the King’s Fund and Paying for long-term Care: Moving forward by the Joseph Rowntree Foundation.

4. The HMT’s Pre-budget report and comprehensive spending review in October 2007 stated: ‘The Government …intends to develop a reform strategy [for social care], and will spend the next period in consultation with public, private and third sector organisations who have contributed to the debate thus far. Next year the Government will set out a process involving extensive public engagement and ultimately leading to a Green Paper identifying key issues and options for reform.’ (Page 100)

http://www.kingsfund.org.uk

The number of nursing homes nationwide that were cited for placing residents in “immediate jeopardy” increased by 22% from 2000 to 2006, according to a USA Today analysis of CMS records. The citations are the most serious reprimand inspectors can issue and often follow cases in which residents have been physically or sexually abused or did not receive their medications, USA Today reports. Nursing homes that are cited for immediate jeopardy may be fined or prohibited from accepting new Medicaid beneficiaries, “a major source of their income,” USA Today reports.

The analysis found that inspectors in 2006 identified nearly 2,000 violations that jeopardized residents at about 850 of the 16,000 nursing homes across the U.S. Those violations account for about 6% of total violations found in nursing homes. CMS records for 2007, which are incomplete, show that more than 1,300 immediate jeopardy citations have been issued.

Richard Mollot, executive director of the Long Term Care Community Coalition, said that the data do not “necessarily mean things are getting worse” but indicate “we’re finding more of the problems.” Jeffery Hammond of the New York State Health Department said, “We have a new mind-set,” adding, “It’s not that the quality of care has gone down, but we are being more rigorous in our enforcement.”

Bruce Yarwood, CEO of the nursing home trade group American Health Care Association, in a statement said that although the number of serious citations is increasing, there have been improvements in patient care (Heath, USA Today, 12/19).

Reprinted with kind permission from http://www.kaisernetwork.org. You can view the entire Kaiser Daily Health Policy Report, search the archives, or sign up for email delivery at http://www.kaisernetwork.org/dailyreports/healthpolicy. The Kaiser Daily Health Policy Report is published for kaisernetwork.org, a free service of The Henry J. Kaiser Family Foundation© 2005 Advisory Board Company and Kaiser Family Foundation. All rights reserved.

New Resources, Kaiser Family Foundation: The Kaiser Family Foundation has released resources that examine the results of the Omnibus Budget Reconciliation Act of 1987, which was intended to improve the quality of nursing home care. The resources include a chartpack, short film and briefing that analyze the history of the law, its provisions, and the progress and problems in providing quality assurance that have occurred in the past 20 years (Kaiser Family Foundation release, 12/7).

A webcast of the briefing is available online at kaisernetwork.org.

Reprinted with kind permission from http://www.kaisernetwork.org. You can view the entire Kaiser Daily Health Policy Report, search the archives, or sign up for email delivery at http://www.kaisernetwork.org/dailyreports/healthpolicy. The Kaiser Daily Health Policy Report is published for kaisernetwork.org, a free service of The Henry J. Kaiser Family Foundation© 2005 Advisory Board Company and Kaiser Family Foundation. All rights reserved.

CMS on Thursday released a list naming 54 nursing homes in the U.S. that continually fail to meet safety and quality-of-care standards in their states, the AP/Minneapolis Star Tribune reports. The facilities are located in 33 states and the District of Columbia.

All nursing homes included on the list were designated as a “special focus facility,” a designation used by CMS to identify nursing homes that require additional oversight. There are 120 designated special focus facilities nationwide, and states conduct inspections at such facilities every six months, rather than annually. The nursing homes on the list, which is posted on the agency’s Web site, received special focus designation but also were found to lack improvement in a later survey.

Nursing homes that receive federal funding are inspected about once per year by regulators who assess whether a facility meets safety and quality-of-care standards. Taxpayers spend about $72.5 billion annually to subsidize nursing home care costs, the AP/Star Tribune reports. Some of the criteria that inspectors look for include administering proper medications to residents, helping residents with daily living activities such as bathing, helping residents with their health care needs and diets, and ensuring that accidents and infections are avoided.

CMS Acting Administrator Kerry Weems said states select the facilities that receive the special focus label from a list submitted by the agency. He also noted that because of regional differences, nursing homes that make the list in one state might provide better care than a home that is not listed in another state. Weems said, “I’m careful in saying they’re not the worst performers, but they are chronic underperformers,” adding, “We’re hopeful making this disclosure will put the right kind of pressure, helpful pressure, on the facilities to move to the path of improvement rather than the path to termination.”

Comments
Sen. Herb Kohl (D-Wis.), chair of the Senate Special Committee on Aging, said, “Very, very poor-quality nursing homes do not deserve to be left untouched or unnoticed,” adding that the list “is not to be punitive. That’s not our goal.” Kohl added, “Our goal is to see to it that the people in these nursing homes get better quality care or that they get the opportunity to move somewhere else.” Sen. Chuck Grassley (R-Iowa) said, “The federal agency responsible for nursing homes is doing the right thing by letting the public know which homes yo-yo in and out of compliance with the minimum requirements of care.”

Bruce Yarwood, president and CEO of the American Health Care Association, said nursing home administrators support greater disclosure, adding, “Every time you go under a microscope like that, especially in our profession, you want to get out from under that microscope. There will be a heck of a lot of effort not to stay there.”

However, administrators are concerned that because of the time it takes for inspection results to be disclosed, nursing homes that have made marked improvements still would be listed on CMS’ Web site (Freking, AP/Minneapolis Star Tribune, 11/28).

Reprinted with kind permission from http://www.kaisernetwork.org. You can view the entire Kaiser Daily Health Policy Report, search the archives, or sign up for email delivery at http://www.kaisernetwork.org/dailyreports/healthpolicy. The Kaiser Daily Health Policy Report is published for kaisernetwork.org, a free service of The Henry J. Kaiser Family Foundation© 2005 Advisory Board Company and Kaiser Family Foundation. All rights reserved.

Some physicians and large employers in the U.S. have been looking at a patient-centered medical home system to help reduce health care costs, the Wichita Eagle reports. Under the model, primary care physicians become the hub for care coordination, “taking personal responsibility and accountability for the ongoing care of patients,” according to the Eagle.

Rick Kellerman, chair of the American Academy of Family Physicians board, said that the system saves money and improves care by reducing duplicate and unnecessary tests and procedures. Some states have been testing the model by using it for their Medicaid programs.

This month, the Patient-Centered Primary Care Collaborative — a collaborative of more than 50 physicians, large employers, consumer groups and some insurers that advocate for the medical home system — held its first “call-to-arms summit,” the Eagle reports. According to the Eagle, the system has less to do with government regulation and more to do with the structure of insurance reimbursement and how PCPs are paid.

Under a medical home model, the payment system between insurers and providers is not capped so the patients do not feel like their insurance reimbursement rates determine their care, Kellerman said. Kellerman added that the U.S. has “a system that totally devalues primary care,” adding, “(It) is very uncoordinated … and it does not emphasize preventive services” (Atwater, Wichita Eagle, 11/25).

Reprinted with kind permission from http://www.kaisernetwork.org. You can view the entire Kaiser Daily Health Policy Report, search the archives, or sign up for email delivery at http://www.kaisernetwork.org/dailyreports/healthpolicy. The Kaiser Daily Health Policy Report is published for kaisernetwork.org, a free service of The Henry J. Kaiser Family Foundation. © 2005 Advisory Board Company and Kaiser Family Foundation. All rights reserved.

AARP Legislative Counsel David Certner made the following statement in response to the Centers for Medicare and Medicaid (CMS) announcement regarding poor performing nursing homes in the Special Focus Facility (SFF) program:

“Residents in the poorest performing nursing homes and their families have a right to know that the care they receive may be sub-standard. Earlier this year AARP called on CMS to release this information, and we are pleased CMS has agreed. People in need of 24-hour care should not have to be concerned that their nursing home is a potentially harmful environment. This information will also be helpful to individuals and their families who are looking to choose a quality facility.

“Last week, AARP submitted testimony to Congress recommending ways to improve nursing home quality. Demanding transparency and documenting nursing home ownership; requiring better data on nursing home staffing levels and turnover and public disclosure of this information; and enforcement of existing nursing home quality standards were cited as critical to improving nursing home quality. Our most vulnerable citizens deserve better and we applaud CMS for taking this step towards quality improvement – it’s now time to take the next step and begin reforming the system that cares for those most in need.”

For the complete testimony AARP submitted to the House Ways and Means Subcommittee on Health and the Senate Special Committee on Aging or for the full letter AARP sent to CMS on August 9, 2007, requesting it make publicly available the nursing homes in the SFF program, please contact Drew Nannis or Nancy Wood at 202-434-2560.

AARP is a nonprofit, nonpartisan membership organization that helps people 50+ have independence, choice and control in ways that are beneficial and affordable to them and society as a whole. AARP does not endorse candidates for public office or make contributions to either political campaigns or candidates. We produce AARP The Magazine, published bimonthly; AARP Bulletin, our monthly newspaper; AARP Segunda Juventud, our bimonthly magazine in Spanish and English; NRTA Live & Learn, our quarterly newsletter for 50+ educators; and our website, AARP.org. AARP Foundation is an affiliated charity that provides security, protection, and empowerment to older persons in need with support from thousands of volunteers, donors, and sponsors. We have staffed offices in all 50 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands.

U.S. adults who care for elderly people on average have annual out-of-pocket costs of $5,531, which accounts for about 10% of their salaries, according to a study released on Monday, the New York Times reports. The study — conducted by the National Alliance for Caregiving, a research and policy group, and Evercare, a division of UnitedHealth Group that coordinates long-term care for 150,000 members — included a telephone survey of 1,000 adults who cared for someone older than age 50. According to the study, only two respondents said that they did not have out-of-pocket costs. The study also found that:

* 37% of respondents had to quit their jobs or reduce their working hours to care for elderly family members or friends;

* The most common out-of-pocket costs cited by respondents included household goods and foods (42%), followed by transportation (39%), medical copayments and prescription drugs (31%), clothing (21%), and home repair and maintenance (13%); and

* The most common strategies used to cover out-of-pocket costs included reductions in spending on leisure activities (49%), reductions in spending on vacations (47%), delays of major purchases or home improvements (34%), use of personal savings (34%), limits on personal savings (27%) and delays of personal health care (23%).

In addition, the study included separate diary reports from 41 adults who cared for elderly people and received $100 to track their out-of-pocket costs during one month. The study found that the diarists on average had annual out-of-pocket costs of $12,348. The study did not explain the difference between the annual out-of-pocket costs of the diarists and those of the survey respondents. The study recommended increased government assistance for adults who care for elderly parents or spouses through tax deductions, tax credits or other stipends.

NAC President Gail Gibson Hunt said, “Typically, when people talk about services for caregivers, they mean respite care, support groups and things like that,” adding, “They don’t think of the financial side being tied into the burden. If you’re spending 10% of your income, that’s part of what’s weighing on you, and policymakers haven’t paid enough attention to that” (Gross, New York Times, 11/19).

Reprinted with kind permission from http://www.kaisernetwork.org. You can view the entire Kaiser Daily Health Policy Report, search the archives, or sign up for email delivery at http://www.kaisernetwork.org/dailyreports/healthpolicy. The Kaiser Daily Health Policy Report is published for kaisernetwork.org, a free service of The Henry J. Kaiser Family Foundation© 2005 Advisory Board Company and Kaiser Family Foundation. All rights reserved.

A new vaccine against nine of the most harmful strains of human papillomavirus is under study at the Medical College of Georgia.

The vaccine, called nine-valent, is being compared with Gardasil, a quadrivalent vaccine already on the market that works against the two most deadly HPV types.

“We’re testing Gardasil against three different doses of the investigational vaccine,” says Dr. Daron Ferris, family medicine physician and director of the MCG Gynecologic Cancer Prevention Center. “This study will determine the best dose of the new vaccine and whether it is safe, well-tolerated and effective in preventing HPV infection and disease compared with what’s already out there.”

Gardasil, approved by the U.S. Food and Drug Administration in 2006, protects against HPV types 16 and 18, which cause about 70 percent of HPV-related cervical cancer cases, and types 6 and 11, which cause about 90 percent of genital wart cases.

The new drug could prevent infection from those four types and five other cancer-causing types, Dr. Ferris says.

“Women infected with those five types of HPV also have an increased risk of developing severe precancerous cervical disease and cervical cancer,” he says. “While genital warts go away on their own in most cases, cervical precancerous lesions are less likely to disappear without treatment.”

HPV is incurable and Gardasil is the only preventive treatment on the market, Dr. Ferris says. Treatments range from topical creams to surgical removal of precancerous lesions.

Like Gardasil, the new vaccine contains proteins that form virus-like particles that assemble into a hollow sphere resembling HPV’s protective coating.

“Since the sphere lacks the actual viral DNA on the inside, it cannot cause HPV,” Dr. Ferris says. “But the body is tricked into making antibodies to protect against the real thing.”

In the previous Gardasil studies, half of the subjects were given Gardasil while the other half got a placebo (saline water). In this study, the placebo is Gardasil, so both groups get a vaccine.

“Either they’ll be vaccinated against four or nine types of HPV,” Dr. Ferris says. “It’s a win-win situation.”

The initial target group for the new vaccine will be females age 9-26 because most HPV infections occur among 15- to 25-year-olds.

Study participants will have five to11 office visits over seven months to three-and-a-half years that will include physical and pelvic exams; Pap smears to detect cancerous or precancerous changes of the cervix; and HPV testing.

The Evercare/National Alliance for Caregiving Study released finds that half of those caring for a loved one 50 years or older are spending on average more than 10 percent of their annual income on caregiving expenses and often sacrifice their own long-term financial and personal well-being to do so. The Evercare®/NAC Study of Caregivers – What They Spend, What They Sacrifice finds that family caregivers, who have annual median income of $43,026, spend an average $5,531 a year on caregiving, an amount that is $400 more than the average American household spends each year on health care and entertainment combined, according to the Bureau of Labor Statistics. Further, the Study found that at lower income levels the annual average costs remained about $5,500 – making their financial burden even heavier.

The Study also uncovered that one in three respondents (34 percent) had used some of their savings to cover the cost of caregiving and one-quarter (23 percent) said they had cut back on their own health care spending. But, according to the respondents, the most significant sacrifice was their own time spent caring for an older loved one. Importantly, most of the caregivers from the Study still saw their caregiving role as a labor of love and one they do willingly.

The comprehensive study was undertaken by Evercare, one of the nation’s leading health care coordination programs, in collaboration with the National Alliance for Caregiving (NAC), the leading national research authority on caregiving. It builds on data uncovered in a 2004 NAC/AARP study, which found that 34 million people care for a loved one 50 years or older, and that there are out-of-pocket costs associated with caregiving. The Evercare/NAC study provides the first in-depth look at the financial and other “personal costs” of caregiving, and indicates that as many as 17 million people, or 51 percent of the 34 million caring for a loved one 50 years or older, are spending on average more than 10 percent of their annual income on caregiving expenses. The Evercare/NAC study also uncovered significantly higher costs related to caregiving – in fact, more than twice as much as previously reported.

“Caregivers play a vital – and under-recognized – role in ensuring the health and well-being of our aging population, but in doing so they are neglecting their own futures,” says John Mach, M.D., a geriatrician and CEO of Evercare. “We need to put in place support systems and plans now to help ensure today’s caregivers can be properly cared for tomorrow — and that our society and our health care system are ready to meet their needs.”

“We knew that the costs associated with caregiving needed a closer look, but to find that more than half of the caregivers are spending more than 10 percent of their income on average sheds new light on the incredible financial burden of those we’re relying on to care for our aging population,” said Gail Hunt, president of the NAC. “The Study points to a Catch-22 for these caregivers. By spending today, they risk being unable to meet their own needs tomorrow.”

Other caregiving studies have looked at the costs to employers or the economic impact on society. A 2004 study by NAC/AARP showed that 21 percent of U.S. households contain at least one caregiver. According to the U.S. Census Bureau, that number is expected to surge as today’s Baby Boomers age and the number of Americans over the age of 65-35 million now-doubles over the next 10-15 years.

What Caregivers Spend – Where the Dollars Go

According to the 2006 U.S. Census Bureau information, the median annual income of U.S. households is $59,894. In the Evercare/NAC Study, of the 1,000 caregivers who participated in the telephone survey, the median household income was $43,026, with the income breakout of the respondents as follows: 22 percent at less than $25,000, 29 percent between $25,000-$50,000, 16 percent between $50,000 – $75,000, 10 percent between $75,000 – $100,000, 8 percent at $100,000 or more and 15 percent who didn’t know or refused to provide that data.

The Study found the most common caregiving expenses respondents cited were:

- Household goods, food and meals (42 percent)
- Travel and transportation costs (40 percent)
- Medical co-pays and pharmaceuticals (31 percent)
- Medical equipment and supplies (22 percent)
- Clothing (21 percent).

The Study also looked at the difference in costs for varying caregiving situations. Long-distance caregivers had the highest average annual expenses ($8,728), followed by co-resident caregivers ($5,885) and those who cared for someone living less than an hour away ($4,570).

Providing a qualitative look at caregiver costs, Evercare and NAC also asked 41 respondents to keep a detailed diary of their expenses for 30 days. The diarists spent an average of $1,029 on caregiving over the one-month period. Extrapolating this cost over a year shows that the diarists were spending twice the average of the other respondents – $12,348 annually. One diarist said, “I have gotten so far behind on all of my bills … It’s hard to say ‘no’ to my dad.” The Study did not assess whether the diarists had more complex caregiving situations than average or whether the telephonic survey respondents had possibly underestimated their costs.

What Caregivers Sacrifice – It’s Not Just Money, But Also Time

More than half of the Study respondents (53 percent) did not work while 37 percent of the respondents said they had quit their job or reduced their work hours. The respondents also reported they were spending on average 35.4 hours a week caring for their loved one with 19 percent providing care for more than three years and 32 percent caregiving for more than five years.

To accommodate the caregiving time and expenses they had, Study respondents were making the following sacrifices:

- Cutting back on leisure activities (49 percent) and vacations (47 percent)
- Saving less or not at all for their children’s future (38 percent)
- Using their savings (34 percent)
- Cutting back on basics such as clothing, utilities or transportation (27 percent) and groceries (25 percent)
- Cutting back on personal medical or dental expenses (23 percent)

“Time is the most expensive commodity I provide – but it has no price tag”, one caregiver among the diarists commented. Despite the sacrifice, caregivers also said it was a commitment they made willingly. Another diarist said, “It is a way to spend quality time … my siblings who aren’t around won’t know them or appreciate them as much as I do because of this.”

While the survey focused on the personal financial costs of caregiving, it also revealed a ripple effect: respondents felt their out-of-pocket costs carried an emotional and physical price. Study respondents reported on the personal and emotional impact which includes heightened stress or anxiety (65 percent), difficulty sleeping (49 percent), increased financial worries (43 percent), depression or hopelessness (37 percent), and new or worsening health problems (26 percent). This is consistent with findings from last year’s Evercare/NAC Study, Caregivers in Decline (2006), which focused on health risks of caregiving.

The Importance of Supporting the Caregivers

The care provided by family caregivers is an integral part of America’s health care system. Yet, alarmingly, statistics from a 2005 brief provided by the Commonwealth Fund show that caregivers are twice as likely as the general population to develop multiple chronic illnesses. People with chronic illnesses also are among the heaviest users of medical care in the nation; people with five or more chronic conditions make up just 20 percent of Americans age 65 and older, but account for 68 percent of all Medicare spending according to a 2004 report by the Partnership for Solutions.

Evercare, as a leader in Special Needs Plans, which are designed for Medicare beneficiaries with complex and multiple chronic health conditions, believes the role of family caregivers is integral to the health and well-being of their loved one. And, through Evercare health plans, family caregivers are part of the primary care team led by Evercare Nurse Practitioners and Care Managers who help coordinate care and guide members to improve their health outcomes, remain independent and live at home as long as possible. In addition, more than 700,000 working caregivers have access to Evercare™ Solutions for Caregivers, a caregiver services and support program provided through employers nationwide or on a private-pay basis.

“The Evercare/NAC Study uncovers further evidence that caregiver support must become a central component of health care, long-term care and social service policymaking,” says Dr. Mach.

About the Study/Methodology

This study was conducted as a mixed-method study that included a telephone survey (random digit dialed) of family caregivers that explored their expenses and the consequences and correlates of these expenses (n=1,000). The researchers, Mathew Greenwald and Associates Inc., who conducted the telephone survey, continued to call until 1,000 screened respondents had been surveyed. Linda Naiditch was the principal researcher. The three screening questions asked:

1. Whether or not the respondent had spent time caring for a relative or friend over the age of 50 during the past month who had one or more chronic conditions making self-care difficult;

2. Whether they helped that person on a regular basis with activities of daily living; and

3. Whether they provided help with the instrumental activities of daily living. (Instrumental Activities of Daily Living are tasks such as grocery shopping, housekeeping, transportation, and meal preparation; Activities of Daily Living are personal care tasks such as bathing, dressing, feeding, and toileting.)

To be included in the survey, the respondent must have provided help to someone 50 and over during the past month and provided help with either the activities of daily living or the instrumental activities of daily living or both. If respondents reported they had provided help but did not report that they had provided either of the two types of assistance, they were not included in the respondent pool.

The survey was conducted during June and July 2007 and has a margin of error of plus or minus three percentage points at the 95% confidence level. (Sub-groups within this sample would have larger margins of error.) The average age of respondents was 56.

The telephonic survey was also used to recruit a pool of family caregivers willing to keep a 30-day expense diary about their actual out-of-pocket expenses and the opportunity costs associated with caregiving. Donna Wagner, PhD and director of gerontology at Towson University who conducted the diary research, included in this report the expense totals for 41 diarists. In addition to having diarists keep track of their expenses, data were collected through personal phone calls with the diarists. Each diarist was assigned a researcher whose job was to contact them on a regular basis to encourage them to keep up to date on their diary entries and to collect information about the care situation. The diary portion of the study spanned July, August, September and October 2007. Diarists who completed the 30-day diary were provided a $100 honorarium.

About Evercare

Evercare coordinates health care and well-being services for people who have long-term or advanced illnesses, are older or have disabilities. Started in 1987, Evercare today serves more than 150,000 people nationwide through a variety of Medicaid, Medicare, and private-pay health plans, programs and services in the home, the community and skilled nursing facilities. The Evercare™ Solutions for Caregivers program provides caregiving support, assistance and services for approximately 700,000 caregivers and their families delivered primarily through employer work-life programs. Evercare is part of Ovations, a division of UnitedHealth Group (NYSE: UNH) dedicated to the health care needs of Americans over age 50.

Evercare

About National Alliance for Caregiving

Established in 1996, the National Alliance for Caregiving is a nonprofit coalition of more than 40 national organizations that focuses on issues of family caregiving across the life span. The Alliance was created to conduct research, do policy analysis, develop national programs and increase public awareness of family caregiving issues. They also work to strengthen state and local caregiving coalitions and work on international caregiving alliances. Recognizing that family caregivers make important societal and financial contributions toward maintaining the well being of those for whom they care, the Alliance’s mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients.