Caregivers, Albany: Caregivers Support Services

The survey conducted by the market research firm Ipsos on behalf of Easter Seals solicited feedback from 351 brothers and sisters of people with developmental disabilities from across the country. A control group of nearly 1,400 adults with typically developing siblings was also polled. The Easter Seals Siblings Study sheds light on the experiences of sibling caregivers as well as insight on the services and supports they need:

80% of survey respondents say they have a close relationship with their sibling with a disability and that this relationship enhances their life;
Nearly 50% say their parents currently house and provide caregiving for their sibling with a disability while 14% say their sibling lives with them and another 23% say they are already the primary caregiver;
75% of primary caregivers say caring for their sibling is a full-time job, and 30% say they don’t receive support – emotional, physical or financial help – from other friends and family;
Of respondents expecting to take on the role of primary caregiver in the future, 80% say they are comfortable taking on this role but they are much more likely to say they are emotionally prepared than financially prepared (60% vs. 33%).

For more information and to download the executive summary and the full report, click here.

Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners by Sarah Schwartz, MSSA and Laura Darlak, BA, under supervision of Carol J. Whitlatch, PhD, with oversight by Kathleen Kelly, MPA
The National Center on Caregiving at the Family Caregiver Alliance in collaboration with the Margaret Blenkner Research Institute of the Benjamin Rose Institute on Aging
December 2012

This updated review was developed for researchers and program developers to accurately assess the knowledge and well-being of family caregivers as they perform the tasks necessary to maintain the health of their ill or elderly relatives. It is the second edition and follow-up to the first Resource Inventory, published by Family Caregiver Alliance's National Center on Caregiving in 2002.Valid, reliable assessment tools are necessary to gauge families' abilities to continue providing care.

The Resource Inventory provides a compendium of caregiver assessment measures that are practice-oriented, practical and applicable, and which address the multidimensional aspects of the caregiving experience.

Family Caregiving and Transitional Care: A Critical Review
by Mary Jo Gibson, MA; Kathleen Kelly; and Alan K. Kaplan, MSc, JD
The National Center on Caregiving at Family Caregiver Alliance
December 2012

This report is an examination of the often ignored--yet absolutely essential--role of caregiving families as patients transition from one healthcare setting to another, for example discharge from hospital to home or hospital to rehab facility. The report notes that although family caregivers are usually the individuals who will actually implement care plans following release from the hospital, they are rarely actively included in discharge planning; worse, their training, even for complex medical procedures, is often insufficient. The all-too-common result: preventable negative outcomes for patients.

Social support is associated with blood pressure responses in parents caring for children with developmental disabilities by Stephen Gallaghera and Jenny Whiteleyb, Research in Developmental Disabilities. Volume 33, Issue 6, November–December 2012, Pages 2099–2105.
Highlights

Caregiving is associated with high blood pressure in parents.
Caregiving is associated with high stress and low social support in parents.
Social support is associated with blood pressure responses in parents.
The importance of the social support for these families was discussed.

National Study of Long-Term Care Providers
Centers for Disease Control and Prevention

The National Study of Long-Term Care Providers (NSLTCP) is a groundbreaking new initiative to monitor the diverse and evolving long-term care field and inform long-term care planning and policymaking. NSLTCP is using data from surveys of residential care communities and adult day services centers and administrative data on home health agencies, nursing homes and hospices to produce representative national and state estimates of the supply, use, and characteristics of these five major sectors of the long-term care industry. NSLTCP will be conducted every other year starting in 2012. For more information on this initiative, including a fact sheet, click here.

New Study Says People Living Longer Worldwide

Longevity is increasing across the globe as more previously underdeveloped countries and conquering or minimizing malnutrition, tuberculosis and other diseases which kill many children. The study financed by the Bill and Melinda Gates Foundation says that 43% of people now die after the age of 70 versus 33% in 1990. Life expectancy has improved most dramatically in many Third World countries. In the United States, it has also increased but at a slower rate. The report noted that life expectancy for American women has risen two years since 1990 but that slower pace means that life expectancy for American women is now 36th in the world versus 22nd in 1990. Obesity and smoking may be leading factors in the slower gains for American women.

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Improving Home Care While Reducing Hospital Admission

Research shows that the amount of care and assistance received from informal caregivers had an important impact on self-care ability and rehospitalization risk.

------

Nursing Home, Assisted Living and Other Extended Care Costs Continue to Rise in U.S.

According to the newly released 2012 MetLife Market Survey of Nursing Home, Assisted Living, Adult Day Services and Home Care Costs, conducted for the 10th year by the MetLife Mature Market Institute, national average rates for long-term care in the U.S. continue to rise. The average cost of a semi-private room in a nursing home rose 3.7% in 2012, from $214 daily or $78,110 annually in 2011, to $222 or $81,030 annually. Assisted living base rates increased by 2.1%, from $3,477 monthly or $41,724 annually to $3,550 or $42,6000 annually. The average rate for a homemaker increased by 5,3% from $19 to $20 per hour. Only rates for home health aides and adult day services were unchanged year to year, remaining at $21 per hour and $70 per day respectively.

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A new family caregiver guide, available free on the web, which offers advice about how to get that all-important follow-up appointment after discharge from a hospital. Like all the family caregiver guides, it’s in English, Spanish, Chinese, and Russian.

http://nextstepincare.org/Provider_Home/Post_Discharge_Appointment

------

An updated tool Resource Inventory for Practitioners Selected Caregiver Assessment Measures (2nd Edition):
This inventory represents a select group of caregiver assessment measures specifically chosen for practical application by practitioners who work with family and informal caregivers of older persons and adults with disabilities.

------

A report based on the first population-based survey of its type shows that 46 percent of family caregivers in the U.S. perform medical and nursing tasks. Three out of four provide medication management – including administering IVs and injections – for a family member with multiple chronic physical and cognitive conditions. More than a third of these caregivers providing medical and nursing tasks reported doing wound care. Other tasks include operating specialized medical equipment and monitors. read more >

Based on an online survey conducted by Harris Interactive on behalf of the MetLife Mature Market Institute between April 4, 2012 and April 11, 2012. The nationally representative sample included 1,008 grandparents age 45 or older who were selected from among Harris Interactive online research panel.

Just in time for Labor Day, the AARP Public Policy Institute released a new report highlighting issues affecting working caregivers of older adults. The report, Protecting Family Caregivers from Employment Discrimination, identifies discrimination in the workplace encountered by workers with eldercare responsibilities as an emerging trend and highlights the limited protections for working caregivers. The report calls for developing public and private solutions to ensure that workers with eldercare responsibilities receive equal employment opportunity and are protected from workplace discrimination. read report

The report was produced with support from The SCAN Foundation and The Commonwealth Fund as a follow-up piece to Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers.

On June 22, 2012, the Bureau of Labor Statistics released their most recent results of how Americans spent their time in the previous 24 hours. They ask how many minutes and hours they devoted to everything from shopping to child care to phone calls. The results, culled from 12,500 respondents, make up the American Time Use Survey. The finding on how much time is spent on providing care to our frail or elderly may be of interest to you.
See the report here | Press Release

Researchers Make Progress on Rare Dementia That Can Turn Spouses Into Strangers (nice overview story on Frontal-temporal dementia) It's rarer than Alzheimer's and much less understood, but a disorder called frontotemporal dementia can be even more devastating because it causes silence, apathy and bizarre personality changes without leading to tell-tale memory lapses. Researchers are just beginning to understand the disorder. Read more in the New York Times.

Stepping Up For Kids: What Government and Communities Should Do to Support Kinship Families. The Annie E. Casey Foundation is one of the most respected and influential youth organizations in the country. This report, highlights the need for stronger policies regarding kinship care. Press Release | Report

A report released in 2005 by the National Alliance for Caregiving and the United Hospital Fund said there were at least 1.3 million caregiving youths, ages 8 to 18, nationwide. It's a population that has been virtually hidden. According to a 2006 study conducted by Civic Enterprises for the Bill and Melinda Gates Foundation, 22% of high school dropouts in the United States leave school to care for a family member.

AAN Issues Guideline on When People with Alzheimer’s Disease Should Stop Driving
read release

The Alzheimer's Foundation of America (AFA) late last week applauded the Social Security Administration for including early-onset Alzheimer's disease among the medical conditions that clearly qualify and will be given automatic approval for Social Security and Supplemental Security Income disability benefits, rather than have individuals go through what could be a lengthy qualification process.

The change, announced February 11, folds early-onset Alzheimer's disease, as well as37 other medical conditions, into what is known as the "Compassionate Allowances" category. It takes effect March 1.

"Every minute counts for people with Alzheimer's disease," said Eric J. Hall, AFA's president and chief executive officer. "By fast-tracking the process to obtain benefits, the Social Security Administration is assisting countless younger individuals with Alzheimer's disease and their families whose quality of life depends on this type of support. The Compassionate Allowance will make an enormous difference in enabling affected individuals to move toward managing their diagnosis and planning for the future."

Early-onset Alzheimer's disease is a rarer form of the brain disorder in which symptoms appear prior to age 65, even occurring in individuals in their 30's and 40's. More commonly, Alzheimer's disease affects individuals 65 and older.

Last September, in a comment letter to the Social Security Administration, AFA had pressed for fast-tracking in light of the significant number of individuals with early-onset Alzheimer's disease as well as the additional issues they often face due to their younger age. For example, AFA had noted, they are less likely to be diagnosed because healthcare providers generally don't look for this brain disorder in younger people; and many who are still employed when symptoms emerge are forced to give up work and other responsibilities due to their declining cognitive function.

Anti-psychotics and dementia Following an FDA warning regarding the dangers of giving anti-psychotic medications to people with dementia, NYS Office of Mental Health released an advisory for mental health providers in NYS. Click here .

The Alliance sent the Advisory on to the NYS Department of Health, Division of Long-Term Care and to organizations that represent nursing homes in the hopes that similar standards would be established in the long-term care system. No word yet whether they have or have not.


	News - Recently Released Research

	Agency Newsletters \| Press Articles \| Recently Released Research Easter Seals Sibling Study Updated November 12, 2012 The survey conducted by the market research firm Ipsos on behalf of Easter Seals solicited feedback from 351 brothers and sisters of people with developmental disabilities from across the country. A control group of nearly 1,400 adults with typically developing siblings was also polled. The Easter Seals Siblings Study sheds light on the experiences of sibling caregivers as well as insight on the services and supports they need: 80% of survey respondents say they have a close relationship with their sibling with a disability and that this relationship enhances their life; Nearly 50% say their parents currently house and provide caregiving for their sibling with a disability while 14% say their sibling lives with them and another 23% say they are already the primary caregiver; 75% of primary caregivers say caring for their sibling is a full-time job, and 30% say they don’t receive support – emotional, physical or financial help – from other friends and family; Of respondents expecting to take on the role of primary caregiver in the future, 80% say they are comfortable taking on this role but they are much more likely to say they are emotionally prepared than financially prepared (60% vs. 33%). For more information and to download the executive summary and the full report, click here. ------- Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners by Sarah Schwartz, MSSA and Laura Darlak, BA, under supervision of Carol J. Whitlatch, PhD, with oversight by Kathleen Kelly, MPA The National Center on Caregiving at the Family Caregiver Alliance in collaboration with the Margaret Blenkner Research Institute of the Benjamin Rose Institute on Aging December 2012 This updated review was developed for researchers and program developers to accurately assess the knowledge and well-being of family caregivers as they perform the tasks necessary to maintain the health of their ill or elderly relatives. It is the second edition and follow-up to the first Resource Inventory, published by Family Caregiver Alliance's National Center on Caregiving in 2002.Valid, reliable assessment tools are necessary to gauge families' abilities to continue providing care. The Resource Inventory provides a compendium of caregiver assessment measures that are practice-oriented, practical and applicable, and which address the multidimensional aspects of the caregiving experience. The report is available at: http://caregiver.org/caregiver/jsp/content/pdfs/SelCGAssmtMeas_ResInv_FINAL_12.10.12.pdf ------- Family Caregiving and Transitional Care: A Critical Review *by Mary Jo Gibson, MA; Kathleen Kelly; and Alan K. Kaplan, MSc, JD* *The National Center on Caregiving at Family Caregiver Alliance* *December 2012* This report is an examination of the often ignored--yet absolutely essential--role of caregiving families as patients transition from one healthcare setting to another, for example discharge from hospital to home or hospital to rehab facility. The report notes that although family caregivers are usually the individuals who will actually implement care plans following release from the hospital, they are rarely actively included in discharge planning; worse, their training, even for complex medical procedures, is often insufficient. The all-too-common result: preventable negative outcomes for patients. The report is available at: http://caregiver.org/caregiver/jsp/content/pdfs/FamCGing_TransCare_CritRvw_FINAL10.31.2012.pdf ------- Social support is associated with blood pressure responses in parents caring for children with developmental disabilities *by Stephen Gallaghera and Jenny Whiteleyb, Research in Developmental Disabilities. Volume 33, Issue 6, November–December 2012, Pages 2099–2105.* Highlights Caregiving is associated with high blood pressure in parents. Caregiving is associated with high stress and low social support in parents. Social support is associated with blood pressure responses in parents. The importance of the social support for these families was discussed. For abstract, click here. ------ National Study of Long-Term Care Providers Centers for Disease Control and Prevention The National Study of Long-Term Care Providers (NSLTCP) is a groundbreaking new initiative to monitor the diverse and evolving long-term care field and inform long-term care planning and policymaking. NSLTCP is using data from surveys of residential care communities and adult day services centers and administrative data on home health agencies, nursing homes and hospices to produce representative national and state estimates of the supply, use, and characteristics of these five major sectors of the long-term care industry. NSLTCP will be conducted every other year starting in 2012. For more information on this initiative, including a fact sheet, click here. ------ New Study Says People Living Longer Worldwide Longevity is increasing across the globe as more previously underdeveloped countries and conquering or minimizing malnutrition, tuberculosis and other diseases which kill many children. The study financed by the Bill and Melinda Gates Foundation says that 43% of people now die after the age of 70 versus 33% in 1990. Life expectancy has improved most dramatically in many Third World countries. In the United States, it has also increased but at a slower rate. The report noted that life expectancy for American women has risen two years since 1990 but that slower pace means that life expectancy for American women is now 36th in the world versus 22nd in 1990. Obesity and smoking may be leading factors in the slower gains for American women. ------ Improving Home Care While Reducing Hospital Admission Research shows that the amount of care and assistance received from informal caregivers had an important impact on self-care ability and rehospitalization risk. ------ Nursing Home, Assisted Living and Other Extended Care Costs Continue to Rise in U.S. According to the newly released 2012 MetLife Market Survey of Nursing Home, Assisted Living, Adult Day Services and Home Care Costs, conducted for the 10th year by the MetLife Mature Market Institute, national average rates for long-term care in the U.S. continue to rise. The average cost of a semi-private room in a nursing home rose 3.7% in 2012, from $214 daily or $78,110 annually in 2011, to $222 or $81,030 annually. Assisted living base rates increased by 2.1%, from $3,477 monthly or $41,724 annually to $3,550 or $42,6000 annually. The average rate for a homemaker increased by 5,3% from $19 to $20 per hour. Only rates for home health aides and adult day services were unchanged year to year, remaining at $21 per hour and $70 per day respectively. ------ A new family caregiver guide, available free on the web, which offers advice about how to get that all-important follow-up appointment after discharge from a hospital. Like all the family caregiver guides, it’s in English, Spanish, Chinese, and Russian. http://nextstepincare.org/Provider_Home/Post_Discharge_Appointment ------ An updated tool Resource Inventory for Practitioners Selected Caregiver Assessment Measures (2nd Edition): This inventory represents a select group of caregiver assessment measures specifically chosen for practical application by practitioners who work with family and informal caregivers of older persons and adults with disabilities. ------ Almost Half of Family Caregivers Perform Medical and Nursing Tasks A report based on the first population-based survey of its type shows that 46 percent of family caregivers in the U.S. perform medical and nursing tasks. Three out of four provide medication management – including administering IVs and injections – for a family member with multiple chronic physical and cognitive conditions. More than a third of these caregivers providing medical and nursing tasks reported doing wound care. Other tasks include operating specialized medical equipment and monitors. read more > ------ Newly released research on “Grandparents Investing in Grandchildren: The MetLife Study on How Grandparents Share Their Time, Values, and Money” Based on an online survey conducted by Harris Interactive on behalf of the MetLife Mature Market Institute between April 4, 2012 and April 11, 2012. The nationally representative sample included 1,008 grandparents age 45 or older who were selected from among Harris Interactive online research panel. Two in 10 grandparents say they are living in a multi-generational household; 30% of those households include grandchildren. Just over one in 10 grandparents (13%) provides care on a regular basis for at least one grandchild. Of those, 32% are providing care five or more days per week. 7% of grandparents living in multi-generational households say their grandchild’s parents are not living in the home. These data are similar to the U.S. Census American Community Survey6 data utilized in the GrandFacts NationalFact Sheet which reports more than 2.5 million grandparents are householders and responsible for their grandchildren living with them, with more than one third having no parents present in the home. See the full 42 page report at https://www.metlife.com/assets/cao/mmi/publications/studies/2012/studies/MMIGrandparentsStudy_WEB.pdf ------ Just in time for Labor Day, the AARP Public Policy Institute released a new report highlighting issues affecting working caregivers of older adults. The report, *Protecting Family Caregivers from Employment Discrimination, identifies discrimination in the workplace encountered by workers with eldercare responsibilities as an emerging trend and highlights the limited protections for working caregivers. The report calls for developing public and private solutions to ensure that workers with eldercare responsibilities receive equal employment opportunity and are protected from workplace discrimination. read report The report was produced with support from The SCAN Foundation and The Commonwealth Fund as a follow-up piece to Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers.* ------ On June 22, 2012, the Bureau of Labor Statistics released their most recent results of how Americans spent their time in the previous 24 hours. They ask how many minutes and hours they devoted to everything from shopping to child care to phone calls. The results, culled from 12,500 respondents, make up the American Time Use Survey. The finding on how much time is spent on providing care to our frail or elderly may be of interest to you. See the report here \| Press Release ------ Researchers Make Progress on Rare Dementia That Can Turn Spouses Into Strangers (nice overview story on Frontal-temporal dementia) It's rarer than Alzheimer's and much less understood, but a disorder called frontotemporal dementia can be even more devastating because it causes silence, apathy and bizarre personality changes without leading to tell-tale memory lapses. Researchers are just beginning to understand the disorder. Read more in the New York Times. ------ Stepping Up For Kids: What Government and Communities Should Do to Support Kinship Families. The Annie E. Casey Foundation is one of the most respected and influential youth organizations in the country. This report, highlights the need for stronger policies regarding kinship care. Press Release \| Report -- A report released in 2005 by the National Alliance for Caregiving and the United Hospital Fund said there were at least 1.3 million caregiving youths, ages 8 to 18, nationwide. It's a population that has been virtually hidden. According to a 2006 study conducted by Civic Enterprises for the Bill and Melinda Gates Foundation, 22% of high school dropouts in the United States leave school to care for a family member. -- AAN Issues Guideline on When People with Alzheimer’s Disease Should Stop Driving read release -- The Alzheimer's Foundation of America (AFA) late last week applauded the Social Security Administration for including early-onset Alzheimer's disease among the medical conditions that clearly qualify and will be given automatic approval for Social Security and Supplemental Security Income disability benefits, rather than have individuals go through what could be a lengthy qualification process. The change, announced February 11, folds early-onset Alzheimer's disease, as well as37 other medical conditions, into what is known as the "Compassionate Allowances" category. It takes effect March 1. "Every minute counts for people with Alzheimer's disease," said Eric J. Hall, AFA's president and chief executive officer. "By fast-tracking the process to obtain benefits, the Social Security Administration is assisting countless younger individuals with Alzheimer's disease and their families whose quality of life depends on this type of support. The Compassionate Allowance will make an enormous difference in enabling affected individuals to move toward managing their diagnosis and planning for the future." Early-onset Alzheimer's disease is a rarer form of the brain disorder in which symptoms appear prior to age 65, even occurring in individuals in their 30's and 40's. More commonly, Alzheimer's disease affects individuals 65 and older. Last September, in a comment letter to the Social Security Administration, AFA had pressed for fast-tracking in light of the significant number of individuals with early-onset Alzheimer's disease as well as the additional issues they often face due to their younger age. For example, AFA had noted, they are less likely to be diagnosed because healthcare providers generally don't look for this brain disorder in younger people; and many who are still employed when symptoms emerge are forced to give up work and other responsibilities due to their declining cognitive function. -- Anti-psychotics and dementia Following an FDA warning regarding the dangers of giving anti-psychotic medications to people with dementia, NYS Office of Mental Health released an advisory for mental health providers in NYS. Click here . The Alliance sent the Advisory on to the NYS Department of Health, Division of Long-Term Care and to organizations that represent nursing homes in the hopes that similar standards would be established in the long-term care system. No word yet whether they have or have not. News Archives > You will need Adobe Acrobat Reader to view .pdf files

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