Monthly Archives for December 2018

Caregivers Taking Care of Persons with Dementia Have Unique Needs

Published in the Woonsocket Call on December 9, 2018

Being a caregiver 24/7 to a person in relatively good health is a tough job. But, caring for someone with dementia, becomes a 36 hour, say Authors Nancy L. Mace and Peter V. Rabins, in their ground-breaking book (published in 1981) on providing care for those with the devastating mental disorder.

The Washington, DC-based AARP releases survey findings last month that takes a look at this “unique subset of caregivers” who are taking care of persons with dementia and other cognitive disorders. Caregiving takes a physical, and emotional toll on these individuals, forcing them to put in longer hours providing care and making adjustments at work and in their personal relationships, says the findings of the newly released study.

The AARP online national survey (of caregivers 18 and older) takes a look at the demands on 700 caregivers taking care of persons with dementia or other forms of cognitive impairments (most often their parents), as well as 400 caregivers who were providing care for a loved one without dementia. Regardless of the situation, on average, caregivers report having been caring for their loved one for almost 3 years.

“Family caregivers take on big responsibilities that can be physically, emotionally and financially challenging. AARP’s new research shows that this can be particularly true for those caring for loved ones with dementia,” said Nancy LeaMond, AARP Chief Advocacy and Engagement Officer, in a statement released with the study report, Caring for People with Dementia: Caregivers’ Experiences. “That’s why AARP has developed resources to help family caregivers balance their own needs with the needs of their loved one,” adds LeaMond.

The AARP Study Found…

Obviously, it is time consuming to be a caregiver. The AARP Survey’s findings, released on November 30, 2018, found that 7 in 10 of those surveyed spend less time with friends and more than half spend less time with other family members because of the intensity of caregiving responsibilities While 75 percent of the survey respondents reported that caring for someone with dementia has brought about closer relationships and more meaning to their lives, the findings also indicate that caregiving experiences bring greater challenges to their lives, too.

According to the 26-page AARP report’s findings, those caring for persons with dementia (more likely a parent) spend on average 13.7 hours per week caregiving while caregivers, taking care of persons with no cognitive afflictions, spend 11.7 hours (more likely a spouse or partner or a friend or neighbor). Three in ten of the caregiver respondents (over age 35) spend over 21 hours per week caregiving, says Study’s findings.

Most of the caregiver respondents providing care to persons with dementia see the devastating disorder’s slowly progressing over time. But younger caregivers perceive that the onset of cognitive decline as suddenly happening.

About 32 percent of the caregiver respondents providing more intense caregiving to persons with dementia say managing their emotions and the demands of care (26 percent) they deliver as the biggest challenges the face.

Caregivers taking care of persons with dementia also reported negative health behaviors. They slept less (71 percent), had more anxiety (65 percent) and depression (54 percent), and spent less time on themselves and with their friends. Research studies reveal that social isolation and loneliness are linked to poorer physical and mental health outcomes.

Not only are the millions of family caregivers for those with dementia less socially connected, they are significantly more likely to put off medical care – over half (55 percent) have done so, compared to just 38 percent among the total caregiver population. However, there were positive health behaviors identified in the poll as well – 79 percent took steps to maintain or improve their brain health and 47 percent exercised more.

About 62 percent of those taking care of persons with dementia state that their intense caregiving responsibilities have led them to working different hours, leaving work early (62 percent) or take paid (53 percent) and unpaid time off (47 percent) for caregiving duties, and also worry about their finances.

But, two-thirds of all caregivers surveyed say they feel closer to their loved one, but those taking care of persons with dementia were more likely to say their relationship with their loved one over time had grown further apart (22 percent) than others. Those caregivers of persons with dementia were more likely to say the relationship with other family has been strained.

Finally, caregiver respondents say that they are receiving what they need from health care providers yet those caring for someone with dementia also have sought out more information about caregiving and from a greater variety of sources.

The AARP survey was conducted October 1-10, 2018. Data are weighted by income, gender, and age according to caregiver benchmarks obtained in Caregiving in the U.S. (2015).

Finding Caregiver Resources

AARP helps family caregivers find the information and support they need to manage their own care along with their loved one’s care. Go to http://www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Dementia Care Guide and the Community Resource Finder.

For more info, contact AARP Researcher G. Oscar Anderson at ganderson@aarp.org.

Report Details Ways to Improve Guardianship System in US

Published in the Woonsocket Call on December 2, 2018

Just days ago, the U.S. Senate Special Committee on Aging held an afternoon hearing in the Senate Dirksen Office Building to alert Congress to appalling stories gathered across the nation regarding abusive guardianships that are taking advantage of vulnerable older adults. At this hearing the Senate Aging Committee also released its annual report that takes a look at an examination of guardianship arrangements including research and recommendations on ways to improve the nation’s guardianship system.

Although guardians provide a valuable and essential service for many older Americans, from deciding where an individual will live and when to seek medical care to choosing if family members are allowed to visit and how to spend retirement savings, unscrupulous guardians acting with little oversight have used legal guardianship proceedings to obtain control of vulnerable individuals and have then used that power to liquidate assets and life-time savings for their own personal gains.

Last April, the Committee held the first hearing in a two-part series this year on the abuse of power and exploitation of older Americans by guardians. The Committee also held a hearing on guardianship in 2016. The Nov. 28th hearing is a continuation of the Committee’s longstanding commitment to bring awareness and prevention to the financial exploitation of older Americans.

Putting the Spotlight on Unscrupulous Guardians

U.S. Senators Susan Collins (R-ME) and Bob Casey (D-PA), the Chairman and Ranking Member of the Senate Aging Committee, put the legislative spotlight on this important legal issue and released the Committee’s 34-page report at the Wednesday hearing titled, “Ensuring Trust: Strengthening State Efforts to Overhaul the Guardianship Process and Protect Older Americans.”

The released Senate Aging Committee report is the culmination of a year-long examination of ways in which the legal system can be improved to better protect individuals subject to these and similar arrangements from abuse, neglect, and exploitation. It addresses three key areas – the importance of guardianship oversight, alternatives to guardianship, and the need for improved data and it makes 13 recommendations.

“An estimated 1.3 million adults are under the care of guardians – family members or professionals – who control approximately $50 billion of their assets,” said Collins, in her opening statement. “Guardianship is a legal relationship created by a court that is designed to protect those with diminished or lost capacity. We found, however, that in many cases, the system lacks basic protections leaving the most vulnerable Americans at risk of exploitation.,” she said.

“While most guardians act in the best interest of the individual they care for, far too often, we have heard horror stories of guardians who have abused, neglected or exploited a person subject to guardianship. As our report notes, there are persistent and widespread problems with guardianship arrangements nationwide,” says Casey in his opening statement. “This is why Senator Collins and I introduced the Guardianship Accountability Act to begin reforming the guardianship system to ensure the protection of seniors under guardian care from losing their rights, savings or possessions because a guardian abused their power,” he said.

Fixing the Nation’s Guardianship System

The Senate Aging Committee took testimony from four guardianship experts who gave their thoughts as to how to improve the system.

Cate Boyko, Senior Court Research Associate at the National Center for State Courts (NCSC), explained that the state court data it collected revealed that none of the states was able to fully report all the information on guardianships they requested. They found that the most serious issues involved local court authority, lack of standardized reporting, and limited technology.

Bethany Hamm, Acting Commissioner of the Maine Department of Health and Human Services, provided background information on the state’s Adult Protect Services and public guardianship program. Hamm discussed Maine Uniform Probate Code (UPC) enacted during the state’s last legislative session. The Maine UPC takes effect in July of next year and requires private guardians to report annually on the condition of the adult and account for money and other property in guardians’ possession or subject to guardians’ control.

Karen Buck, Executive Director at the Pennsylvania-based SeniorLAW Center, a nonprofit legal services agency, described the work her organization does to tackle issues such as guardianship through free legal representation, education, and advocacy for older Americans in Pennsylvania. She argued that guardianship remains an “important tool” to provide care for vulnerable seniors and therefore merits attention and reform.

Finally, Barbara Buckley, Executive Director at the Legal Aid Center of Southern Nevada, described the steps that her state has taken since 2014 to better protect individuals under guardianship. One year later, the Nevada Supreme Court created a Guardianship Commission to examine the guardianship system and recommend reforms., she said, detailing three significant areas of reform implemented in Nevada: the right to counsel, the protected person’s Bill of Rights and other statutory reforms, and the establishment of the Guardianship Compliance Office.

As a result of the Senate Aging Committee’s work to examine issues surrounding guardianship, Collins and Casey announced at this hearing that they were introducing the Guardianship Accountability Act. This bipartisan legislation would promote information sharing among courts and local organizations as well as state and federal agencies, encourage the use of background checks and less restrictive alternatives to guardianship, and expand the availability of federal grants to improve the guardianship system.

Congress Must Act

One of the report’s recommended actions to strengthen guardianship arrangements is for courts to conduct criminal background checks on ALL prospective guardians. To aid states in this pursuit, Casey and Collin’s legislation, the “Guardianship Accountability Act,” promotes oversight of guardianship arrangements and encourages information sharing among government agencies and with other relevant organizations. This bill would also allow states to fund data collection on guardianship arrangements and conduct background checks on guardians.

According to the National Center for State Courts, there are approximately 1.3 million adults and an estimated $50 billion of assets under guardianship arrangements. State courts are tasked with monitoring guardianships in order to protect individuals subject to guardianship from abuse, neglect and exploitation. Despite this responsibility, few states are able to provide courts with adequate resources to monitor guardianships effectively and hold guardians accountable.

When the new Congress begins, hopefully this legislation will sail through both chambers of Congress and be quickly signed by President Donald Trump. We will see…

To get the Senate Aging Committee’s guardianship report, go to http://www.aging.senate.
gov/imo/media/doc/Guardianship%20Report.pdf.

For a copy of the Guardianship Accountability Act, go to http://www.aging.senate.gov/imo/media/doc/
Guardianship%20Accountability%20Act%20of%202018.pdf.

To watch the one hour and forty-seven-minute Senate Aging Committee hearing, go to http://www.aging.senate.
gov/hearings/ensuring-trust-strengthening-state-efforts-to-overhaul-the-guardianship-process-and-protect-older-americans.