Source: Pew Internet & American Life Project
Thirty percent of U.S. adults help a loved one with personal needs or household chores, managing finances, arranging for outside services, or visiting regularly to see how they are doing. Most are caring for an adult, such as a parent or spouse, but a small group cares for a child living with a disability or long-term health issue. The population breaks down as follows:
24% of U.S. adults care for an adult
3% of U.S. adults care for a child with significant health issues
3% of U.S. adults care for both an adult and a child
70% of U.S. adults do not currently provide care to a loved one
Eight in ten caregivers (79%) have access to the internet. Of those, 88% look online for health information, outpacing other internet users on every health topic included in our survey, from looking up certain treatments to hospital ratings to end-of-life decisions.
- According to a 2004 AARP survey, “35% of Boomers have been or are responsible for the care of their elderly parent, up nine points since 1998.”
- A 2008 study from the Sloan Center on Aging & Work of couples and careers “reveals that one in two older workers (those aged 50 and above) have a dependent child in the household and one in five of these workers have an adult child in the household.”
- According to a 2011 analysis of American Community Survey data, “more than one-third (36%) of the 915,000 grandparents ages 60 and older who are caring for their grandchildren were in the labor force in 2010.”
Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study
BackgroundIn late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient’s life.Methods and FindingsWithin a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings.ConclusionsBased on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.
Disability, Ageing and Carers, Australia: Disability and Long Term Health Conditions, 2009 (cat. no. 4433.0) presents a suite of data cubes examining the relationship between disability and long term health conditions. The tables include broad level information on the numbers of people with long term health conditions in each of the States of Australia (ACT and NT are not included). They also include information on some of the most common long term health conditions, the degree to which these restrict people with disability and the causes underlying main conditions.
Several tables provide detailed information on five impairment groups – sensory, intellectual, physical, psychological and head injury (an impairment is where there is loss or abnormality in body structure or the way in which the body or mind work). Impairment groups are examined with relation to living arrangements and to the restrictions particular impairments place on daily living (personal care, schooling and employment). There is also information on the need for, and receipt of, assistance in relation to impairment groups.
Several tables provide information on specific age groups – children (0-14 years), working age adults (15-64 years) and people aged 65 years and over.
Residential Care Facilities: A Key Sector in the Spectrum of Long-term Care Providers in the United States
- In 2010, residential care facilities (RCFs) totaled 31,100, with 971,900 beds nationwide.
- About one-half of RCFs were small facilities with 4–10 beds. The remainder comprised medium facilities with 11–25 beds (16%), large facilities with 26–100 beds (28%), and extra large facilities with more than 100 beds (7%).
- One-tenth of all RCF residents lived in small RCFs and about that percentage (9%) lived in medium facilities, while the majority resided in large (52%) or extra large (29%) RCFs.
- About 4 in 10 RCFs had one or more residents who had some or all of their long-term care services paid by Medicaid.
- Larger RCFs were more likely than small RCFs to be chain-affiliated and to provide occupational therapy, physical therapy, social services counseling, and case management.
On October 14, 2011, the Secretary of Health and Human Services (HHS) informed Congress that HHS had not identified a Community Living Assistance Services and Supports (CLASS) program benefit plan that is both actuarially sound for the next 75 years and consistent with the requirements of Title VIII of the Patient Protection and Affordable Care Act of 2010 (the CLASS Act). Following this announcement, HHS suspended program implementation activities.Effective January 1, 2011, the CLASS Act established the CLASS program as a federally administered, voluntary insurance program to help working adults cover some costs of long-term-care services and supports. The CLASS Act requires the HHS Office of Inspector General (OIG) to submit an annual report to the Secretary and Congress on the overall progress of the CLASS program and the existence of waste, fraud, and abuse in the program. Each report must include findings in four areas: providing cash benefits; determining eligibility; providing quality assurance and protecting against waste, fraud, and abuse; and recouping unpaid and accrued benefits.
We reviewed progress in the development of the CLASS program from March 23, 2010, when the CLASS Act was enacted, through October 14, 2011, when program activities were suspended. This review focuses primarily on the Administration on Aging’s (AoA) activities in the four areas specified in the CLASS Act’s OIG annual reporting requirement after January 2011, when AoA became responsible for developing the program. We obtained data about AoA’s progress from interviews with AoA senior management, a questionnaire completed by AoA staff, and documents provided by AoA to support interview and questionnaire responses.AoA focused most of its efforts on developing at least three actuarially sound benefit plan alternatives, as required by the CLASS Act. The CLASS Act requires the Secretary to designate one of these benefit plan alternatives as the CLASS Independence Benefit Plan by October 1, 2012. As stated above, the Secretary informed Congress of the status of the benefit plan on October 14, 2011.The Secretary has not designated a viable benefit plan. Therefore, we have no recommendations regarding program progress or the existence of waste, fraud, and abuse. OIG will determine the most appropriate way to meet OIG’s CLASS Act reporting requirements in future years based on the program’s status. AoA had no comments on the report.
2011 Market Survey of Long-Term Care Costs
Source: MetLife Mature Market Institute
- The national average daily rate for a private room in a nursing home rose 4.4% from $229 in 2010 to $239 in 2011.
- The national average monthly base rate in an assisted living community rose 5.6% from $3,293 in 2010 to $3,477 in 2011.
- The national average daily rate for adult day services rose 4.5% from $67 in 2010 to $70 in 2011.
- The national average hourly rates for home health aides ($21) and homemakers ($19) were unchanged from 2010.
+ Full Report (PDF)
Children with Disabilities & Sexual Abuse Fact Sheet (PDF)
Source: California Child Abuse Training and Technical Assistance Centers
Perpetrators are likely to be male, either family or extended family, or caregivers in an institutional/home setting such as schools, afterschool programs and other service delivery locations. In fact, professional or paraprofessionals providing in-home services have also been identified as perpetrators of sexual abuse.
Victims tend to be female, although a significant number are male. There are some characteristics of the child victims that seems to increase risk of abuse, including medical needs, caregivers unable to comfort the child, a child’s conduct that is frustrating to the caregiver are some where increased physical abuse has been identified.
Children with intellectual and/or developmentally disabilities are at a higher risk for sexual abuse than others, estimates ranging from 4-10 times the rate.
Data on Prevalence of Abuse shows that Children with Disabilities are:
- 1.7 times more likely to be abused than children without disabilities (Westat, 1991)
- 3.4 times more likely to be abused than children without disabilities (Boystown, 2001)
- Children with disabilities become adults with disabilities where abuse rates continue at higher rates.
- Adults with disabilities are equally as likely to be abuse victims as the generic population (Nosek, 1999)
- The extent of the abuse is “much worse” for women with disabilities (personal care indignities & abandonment)
- Increased rates of abuse by both men and women with disabilities from 31-83% For women with mental retardation & other intellectual disabilities rates from 40-90%
Working American caregivers — those who work at least 15 hours per week and help care for an aging family member, relative, or friend — report that their caregiving obligations significantly affect their work life.
The majority of caregivers say that caregiving has at least some impact on their performance at work. Based on a five-point scale, where five is a great impact and one is no impact, 10% of caregivers choose five and 44% pick somewhere between two and four.
Additionally, 24% of caregivers say that providing care to an aging family member, relative, or friend keeps them from being able to work more.
Most caregivers also report missing entire workdays as a result of their caregiving responsibilities. Thirty-six percent report missing one to five days per year because of caregiving duties, while 30% say they missed six or more days in the past year.
Overall, caregivers reporting missing an average of 6.6 workdays per year. With approximately 17% of the American full-time workforce acting as caregivers, this amounts to a combined 126 million missed workdays each year. This absenteeism costs the U.S. economy an estimated $25.2 billion in lost productivity per year. Including caregivers who work part time in the equation would cause absenteeism costs to climb even higher.