Thursday, January 19, 2017
The New York Times has a recent article that resonates with me. I am spending my sabbatical time in Arizona in order to be of more help to my sister with our parents who are both in their 90s. Neither my sister or I have children and we sometimes question what will happen with us if we reach our parents' age with similar needs. Here's an excerpt from the piece that gets right to the point:
While the demand for caregivers is growing because of longer life expectancies and more complex medical care, the supply is shrinking, a result of declining marriage rates, smaller family sizes and greater geographic separation. In 2015, there were seven potential family caregivers for every person over 80. By 2030, this ratio is expected to be four-to-one, and by 2050, there will be fewer than three potential caregivers for every older American.
For more, read the thoughtful essay Who Will Care for the Caregivers? by Dr. Dhruv Khullar, a resident physician at Massachusetts General Hospital and Harvard Medical School.
Tuesday, January 17, 2017
With the new Presidential administration ahead, many of us are asking what government policies or programs will be "re-imagined." With changes on the horizon, an especially interesting perspective on long-term care is offered by UCLA Law Professor Allison Hoffman with her recent article, "Reimagining the Risk of Long-Term Care," published in the Yale Journal of Health Policy, Law & Ethics. From the abstract:
While attempting to mitigate care-recipient risk, in fact, the law has steadily expanded next-friend risk, by reinforcing a structure of long-term care that relies heavily on informal caregiving. Millions of informal caregivers face financial and nonmonetary harms that deeply threaten their own long-term security. These harms are disproportionately experienced by people who are already vulnerable--women, minorities, and the poor. Scholars and policymakers have catalogued and critiqued these costs but treat them as an unfortunate byproduct of an inevitable system of informal care.
This Article argues that if we, instead, understand becoming responsible for the care of another as a social risk--just as we see the chance that a person will need long-term care as a risk--it could fundamentally shift the way we approach long-term care policy.
As one informal caregiver and scholar described: “I feel abandoned by a health care system that commits resources and rewards to rescuing the injured and the ill but then consigns such patients and their families to the black hole of chronic ‘custodial’ care.” What next friends do for others is herculean, both in terms of the time spent and the ways that they offer assistance.
January 17, 2017 in Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Medicaid, Social Security, State Statutes/Regulations, Statistics | Permalink | Comments (0)
Wednesday, January 11, 2017
I'm much overdue in writing about a terrific, recent workshop at Arizona State University's Sandra Day O'Connor College of Law on "The Aging Brain." For me it was an ideal gathering of disciplines, including experts in neurology, psychology, health care (including palliative care and self-directed aid-in-dying), the judiciary, and both practitioners and academics in law (not limited to elder law). Even more exciting, that full day workshop (11/18/15) will lead into a public conference, planned for fall 2017.
Key workshop moments included:
- Preview of a potentially ground-breaking study of early-onset Alzheimer's Disease (AD) centered on a family cluster in the country of Columbia with a genetic marker for the disease and a high incidence of onset. By "early onset," we're talking family members in their 40s. The hope is that by studying the bio-markers in this family, that not only early onset but later-in-life onset will be better understood. Eric Reiman, with professional affiliations with Banner Health, Arizona State University and University of Arizona, spoke at the workshop, and, as it turned out, he was also featured on a CBS 60 Minutes program aired a short time later about the family-based study. Here's a link to the CBS transcript and video for the 60 Minutes program on "The Alzheimer's Laboratory."
- Thoughtful discussion of the ethical, legal and social implications of dementia, including the fact that self-directed aid-in-dying is not lawful for individuals with cognitive impairment. Hank Greely from Stanford University Law and Medical Schools, and Professor Betsy Grey for ASU's Sandra Day O'Connor College of Law led discussions on key issues. As biomarkers linked to AD are identified, would "you" want to know the outcome of personal testing? Would knowing you have a genetic link to AD change your life before onset?
- Overview of recent developments in "healthy" brain aging and so-called "anti-aging" treatments or medications, with important questions raised about whether there is respected science behind the latest announcement of "breakthroughs." Cynthia Stonnington from the Mayo Clinic and Gary Marchant from ASU talked about the science (or lack thereof), and Gary raised provocative points about the role of the FDA in drug approvals, tracking histories for so-called off label uses for drugs such as metformin and rapamycin.
I very much appreciate the opportunity to participate in this program, with special thanks to Betsy Grey and federal Judge Roslyn Silver for making this possible. I've also enjoyed serving as occasional guest in Judge Silver's two-semester Law and Science workshop with ASU law students. Thank you! For more on the Aging Brain programming at ASU, see here.
January 11, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Programs/CLEs, Science | Permalink | Comments (0)
Friday, January 6, 2017
I was reading a recent blog post on the Scientific American that featured a guest blog by Dr. Snyder, the Senior Director of Medical and Scientific Operations, Medical and Scientific Relations for the Alzheimer's Association. The blog, Alzheimer's Falls More Heavily on Women Than on Men, opens with two vignettes of women who early-onset Alzheimer's.
Alzheimer’s dementia disproportionately affects women in a variety of ways. Compared with men, 2.5 times as many women as men provide 24-hour care for an affected relative. Nearly 19 percent of these wives, sisters and daughters have had to quit work to do so. In addition, women make up nearly two-thirds of the more than 5 million Americans living with Alzheimer’s today.
The blog explains that researchers are studying this to see if they can find the answer, but longevity alone isn't likely it. The post also reports on the work of the Alzheimer's Association including a funding initiative for 9 research projects. Some are looking at lifestyle factors including stress and education. The article concludes with a discussion of the role and importance of advocacy
Sunday, December 25, 2016
The National Center for State Courts, in conjunction with the Conference of Chief Justices (CCJ) and the Conference of State Court Administrators (COSCA) released its Strategic Action Plan 2016 Adult Guardianship Initiative which was adopted on December 1, 2016. According to the report "[t]he mission of the Adult Guardianship Initiative is to improve state court responses to guardianship and conservatorship matters. This Initiative encourages the use of less restrictive alternatives, the prioritization of the protected person’s individual rights, active court monitoring and oversight, the modernization of processes, and the restoration of rights."
The initiative has 4 goals:
Develop and maintain a partnership of key stakeholders ...
Prioritize the protection and enhancement of individual rights ...
Promote modernization and transparency in the guardianship process ...
Enhance guardianship/conservatorship court processes and oversight ...
The initiative also lists several concept projects: (1) Funding and Implementing a Guardianship Court Improvement Program; (2) Conservatorship/Guardianship Accountability Project: Building a National Resource that uses Technology and Analytics to Modernize the Process; (3) National Summit for Courts on Improving Adult Guardianship Practices; (4) Establishing Judicial Response Protocols to Address Guardianship Abuse, Neglect and Exploitation; (5)Developing a Mentor Guardianship Court Program; and (6) Building a Research Portfolio and Developing Court Performance Management Systems.
Visit the Center for Elders and the Courts for more information.
December 25, 2016 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Monday, December 19, 2016
We have written several posts about the graying of the prison population. Here is one more-looking at the long term care prisons provide, functioning in some instances as a nursing home or a hospice. Kaiser Health News (KHN) ran the story, More Prisoners Die Of Old Age Behind Bars.
The number of federal and state prisoners age 55 or older reached over 151,000 in 2014, a growth of 250 percent since 1999.
As this population grows, prisons have begun to serve as nursing homes and hospice wards caring for the sickest patients. The majority of state prisoners who died in 2014 were 55 years or older, and 87 percent of state prisoners died of illnesses, according to the report. The most common illnesses were cancer, heart disease and liver failure.
The article, noting that elders may have multiple health conditions, reports of one inmate with dementia who was placed in the general population rather than in the medical wing. The article also discusses the early release program in some states, known as "compassionate release"
For prisoners clamoring to spend their dying days at home, U.S. prison jurisdictions have some laws on the books, often called “compassionate release” or “medical parole,” allowing for early release if prisoners are very sick and not a threat. But in practice, very few inmates are set free through these programs, said Dr. Brie Williams, director of the University of California Criminal Justice and Health Project in San Francisco.
However, compassionate release isn't always the solution as the article points out, especially when those seeking release are violent offenders, as the article explains some instances where early release of a prisoner resulted in another crime, or release was obtained through fraud. But without compassionate release, the prisoners die in prison, and thus the prison needs to provide nursing home or hospice care for inmates.
What's the solution to this growing problem? " Williams has been watching the population of older prisoners continue to grow, outpacing the general population of the U.S. As this trend continues, she said, prisons and jails need to catch up... 'I’m talking about a massive expansion of the field of palliative care into the correctional system,” she said, “so it’s integrated into the fabric of correctional care.'”
Last week CMS issued an FAQ for Medicaid beneficiaries in the community who wander. FAQs concerning Medicaid Beneficiaries in Home and Community-Based Settings who Exhibit Unsafe Wandering or Exit-Seeking Behavior offers 4 FAQs. Each FAQ offers suggestions for providers. For example, FAQ 3 offers suggestions for staffing, "environmental design" and activities while FAQ 4 offers actions that the providers can take, such as "[e]nsuring that individuals have opportunities to visit with and go out with family members and friends, when they want this." The 4 FAQs are:
How can residential and adult day settings comply with the HCBS settings requirements while serving Medicaid beneficiaries who may wander or exit-seek unsafely?
Can provider-controlled settings with Memory Care Units with controlled-egress comply with the new Medicaid HCBS settings rule? If so, what are the requirements for such settings?
What are some promising practices that HCBS settings use to serve people who are at risk of unsafe wandering or exit-seeking?
How can residential and adult day settings promote community integration for people who are at risk of unsafe wandering or exit-seeking? What are some examples of promising practices for implementing the community integration requirements of the regulations defining home and community-based settings and simultaneously assuring the safety of individuals who exhibit these behaviors?
Sunday, December 4, 2016
The Alzheimer’s Association blog recently ran a post about the challenges of long-distance caregiving. The post features an interview with Richard Lui, a reporter for NBC and MSNBC, who flies weekly across country. Finding Joy in the Face of Alzheimer’s: Richard Lui Talks Family & Long-Distance Caregiving His interview discusses the challenges, cultural issues, how his profession helps and his moments of joy:
I find moments of joy every time I go home! My Dad is a joyous person, which is much different from his personality before the diagnosis. He was a pastor and couldn’t support the family on his salary, so he became a social worker to have a steady income, but that didn’t pay much either and he wasn’t built emotionally for social work’s noble but trying tasks. He cared too much and was often stressed.
As a social worker, he was forward with people and told them what they had to be prepared for. In a way, he was equipping himself to be the happy embracive person he is today. And there’s the silver lining. He accepts his diagnosis for what it is.
For my own part, I’ve had to accept Dad’s Alzheimer’s diagnosis spiritually and emotionally. There was a time when I would describe being with him like watching my father die in front of me. Now I see him being born again in front of me. Life is a stack of pancakes, and Alzheimer’s takes the top pancakes little by little until you’re left with none. But through this process, my father has shown me another side. He hugs me and kisses me and tells me that he loves me over and over again. This is the person he always was who I’m only now getting to know.
Thursday, November 24, 2016
We all need a little good news right now. So this one caught my eye. Dementia rates have declined amongst elders (yay). Kaiser Health News reported Dementia Rates Decline Sharply Among Senior Citizens citing to a study recently published in the AMA Journal of Internal Medicine. A Comparison of the Prevalence of Dementia in the United States in 2000 and 2012 reports on a drop from 11.6% to 8.8% on the years of the study.
Here's the abstract:
Importance The aging of the US population is expected to lead to a large increase in the number of adults with dementia, but some recent studies in the United States and other high-income countries suggest that the age-specific risk of dementia may have declined over the past 25 years. Clarifying current and future population trends in dementia prevalence and risk has important implications for patients, families, and government programs.
Objective To compare the prevalence of dementia in the United States in 2000 and 2012.
Design, Setting, and Participants We used data from the Health and Retirement Study (HRS), a nationally representative, population-based longitudinal survey of individuals in the United States 65 years or older from the 2000 (n = 10 546) and 2012 (n = 10 511) waves of the HRS.
Main Outcomes and Measures Dementia was identified in each year using HRS cognitive measures and validated methods for classifying self-respondents, as well as those represented by a proxy. Logistic regression was used to identify socioeconomic and health variables associated with change in dementia prevalence between 2000 and 2012.
Results The study cohorts had an average age of 75.0 years (95% CI, 74.8-75.2 years) in 2000 and 74.8 years (95% CI, 74.5-75.1 years) in 2012 (P = .24); 58.4% (95% CI, 57.3%-59.4%) of the 2000 cohort was female compared with 56.3% (95% CI, 55.5%-57.0%) of the 2012 cohort (P < .001). Dementia prevalence among those 65 years or older decreased from 11.6% (95% CI, 10.7%-12.7%) in 2000 to 8.8% (95% CI, 8.2%-9.4%) (8.6% with age- and sex-standardization) in 2012 (P < .001). More years of education was associated with a lower risk for dementia, and average years of education increased significantly (from 11.8 years [95% CI, 11.6-11.9 years] to 12.7 years [95% CI, 12.6-12.9 years]; P < .001) between 2000 and 2012. The decline in dementia prevalence occurred even though there was a significant age- and sex-adjusted increase between years in the cardiovascular risk profile (eg, prevalence of hypertension, diabetes, and obesity) among older US adults.
Conclusions and Relevance The prevalence of dementia in the United States declined significantly between 2000 and 2012. An increase in educational attainment was associated with some of the decline in dementia prevalence, but the full set of social, behavioral, and medical factors contributing to the decline is still uncertain. Continued monitoring of trends in dementia incidence and prevalence will be important for better gauging the full future societal impact of dementia as the number of older adults increases in the decades ahead.
The authors offer these findings from their study "Population brain health seemed to improve between 2000 and 2012; increasing educational attainment and better control of cardiovascular risk factors may have contributed to the improvement, but the full set of social, behavioral, and medical factors contributing to the improvement is still uncertain."
The Kaiser article offers some perspective about what this drop means: "The number of Americans over age 65 is expected to nearly double by 2050, reaching 84 million, according to the U.S. Census. So even if the percentage of elderly people who develop dementia is smaller than previously estimated, the total number of Americans suffering from the condition will continue to increase, said Keith Fargo, director of scientific programs and outreach, medical and scientific relations at the Alzheimer’s Association."
So with the end of the semester, and we are grading exams, just think how good this will be for us in the long run!
Monday, October 31, 2016
Recently, San Diego residents learned the sad news that a much appreciated former coach of the Chargers football team, Marty Schottenheimer, age 73, has Alzheimer's Disease. The article I read called it "early onset Alzheimer's." Apparently the original diagnosis was made in 2011, when retired Coach Schottennheimer was approximately age 68. Our wishes to "Coach Marty" and his family.
It is, perhaps, also appropriate to point out that "early onset dementia" is different than than "early diagnosis of dementia." Medical experts typically refer to early onset dementia (sometimes EOAD for Alzheimer's type dementia) only for individuals age 65 or younger, often in a person's 50s, or even earlier.
As an example from the sports world, legendary University of Tennessee women's basketball coach, Pat Summitt, publicly revealed her diagnosis of "dementia, Alzheimer's type," in 2011, at age 59. She continued as the head coach for another academic year, before electing to retire (with, in her words, a "small r").
In the last chapter of her third book, Sum It Up, Pat wrote movingly about her final year of coaching and the impact of her diagnosis, also admitting that she had probably been functioning "well" with Alzheimer's for about three years before she, with the help of her son, sought a diagnosis. She explains how the fact of her diagnosis also led them to explore treatments and management techniques they might otherwise have ignored.
As larger numbers of adults are living longer, I think we are hearing more frequently directly from persons in high positions about diagnoses of Alzheimer's or other neurocognitive impairments. This is important, because when healthy-living sports heroes are affected, we are more likely to pay attention and seek answers for everyone. Whenever I see such news, even as I'm sad, I admire the courage of the speakers and am grateful for their candor. Seeing famous people continue to function, make realistic plans, and enjoy life is important for the "not-so-famous" too. Their public candor highlights the critical need for discovery of preventions and cures for everyone.
I suspect that when a member of the press -- or the nonmedical public -- refers to "early onset Alzheimer's," it is a reflection of hope, hope that any diagnosis at 70, 75, or even 80 must be unusual, rare, and therefore not a threat to "me" before some magically "older" age that is still far off, in the future.
The Washington Post recently had a good article titled Facing Financial Reality When Early Dementia is Diagnosed. It begins with Chuck McClatchey's realization that something was wrong:
He moved to Fort Worth at age 61 with his partner Bobbie Duncan, and they spent $25,000 in savings on a fixer-upper house. His plan was to work until he was 70. But then things got strange. “I was having trouble understanding new technologies and things that I should have known off the top of my head” and having trouble using Word and Excel and PowerPoint, “things I had known for years."
He left that job but had problems in another, simpler job at Lowe’s.
Then one day, amid growing confusion, came clarity.
“I brought home a little desk for me to put together,” he said. “I love to put things together, the more complicated the better.” It should have taken about half an hour. Instead, two hours later, “the pieces just weren’t going together like I thought they should.”
Duncan finally said what they both knew. He needed to see a doctor about what was going on in his brain. The diagnosis was Alzheimer’s. . . .
McClatchey's early diagnosis allowed him to get help while he was still well able to participate in planning. He applied for Social Security disability at age 61 and also became an "early stage advisor" for the the Alzheimer's Association.
Reading this article reminded me of a good friend who also received a diagnosis of Alzheimer's at an early stage. Betty has often inspired me by how she has approached this fact. She quietly told friends of her diagnosis, but she did not retreat from life. Betty stays engaged and has a full social life. She has made critical accommodations -- she keeps a daily journal to help with tasks and memory -- and her children have rallied to support and help her, while still giving her as much autonomy as possible. Indeed, her family was instrumental in these changes as they insisted on that first evaluation, rather than brushing away early warning signs as merely due to stress. Thus, "self awareness" of both Betty and her family has been essential in creating a short and long range plan for the future.
The Post article also suggests that not every financial professional is skilled at recognizing how to help individuals with cognitive impairments, whether diagnosed or undiagnosed. I think this is true for attorneys and other professionals as well. Good intentions alone are not enough. From the article:
Being good with money isn’t the only skill required to help dementia sufferers. Corey Purkat, an Oakdale, Minn., financial planner, found himself unable to help a couple in their 80s who hired him to help sort things out in the early stages of the wife’s dementia. She had been a financial professional whose memory issues rapidly worsened. As they did, “she got defensive that someone would have to help her with something she had done for a living.” That put more stress on her husband, who decided “he wasn’t up to making the hard decisions.”
“I did what I could, and I did the best I could,” he said of their amicable parting. But if a similar case comes up in the future, he said, “my goal is to refer them to someone with more experience” with dementia.
It takes courage to get a diagnosis when early, subtle warning signs appear. It takes courage to help a family member get that diagnosis. Our thanks to George Washington Law Professor Naomi Cahn for sharing the link to this and other timely Washington Post articles.
Friday, October 21, 2016
LeadingAge, the trade association that represents nonprofit providers of senior services, begins its annual meeting at the end of October. This year's theme is "Be the Difference," a call for changing the conversation about aging. I won't be able to attend this year and I'm sorry that is true, as I am always impressed with the line-up of topics and the window the conference provides for academics into industry perspectives on common concerns. For example, this year's line up of workshops and topics includes:
- General sessions featuring Pulitzer Prize winning journalist Charles Duhigg on the "The Science of Productivity," 2013 MacArthur Fellow and psychologist Angela Duckworth on the the importance of grit and perservance for successful leadership, and famed neurosurgeon and speaker Sanjay Gupta on "Medicine and the Media."
- Hundreds of sessions, organized by "interest groups":
October 21, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, International, Legal Practice/Practice Management, Medicaid, Medicare, Programs/CLEs, Property Management, Retirement, Science, Social Security, State Cases, State Statutes/Regulations, Veterans | Permalink | Comments (2)
Tuesday, October 11, 2016
Robin Williams was an amazing, brilliant individual. His wife, Susan Schneider Williams, wrote an editorial recently for Neurology. The terrorist inside my husband's brain was written to help the doctors have a better understanding of their patients, spouses and caregivers. This is a compelling essay that gives us insight into Mr. Williams' situation and that of his wife. All dementias are horrible diseases, and Lewy Body strikes almost 1.5 million folks according to the editorial. Of course, Mr. Williams isn't the only one who has had Lewy Body, but he might be the most famous and was one of the few hit so hard by the disease. "Although not alone, his case was extreme. Not until the coroner's report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem."
Mrs. Williams walks the reader through the last months of their life together, describing how the disease was affecting Mr. Williams personally and professionally. Brilliant and talented, "Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it—no amount of intelligence or love could hold it back." She explains the difficulties with diagnosis and their work to determine how to treat him.
She offers that she and Mr. Williams "had begun our unplanned research on the brain through the door of blind experience. During the final months we shared together, our sights were locked fast on identifying and vanquishing the terrorist within his brain. Since then, I have continued our research but on the other side of that experience, in the realm of the science behind it."
This is a powerful, emotional first person account.
Thursday, October 6, 2016
Kaiser Health News wrote about a new and somewhat controversial therapy being used with Alzheimer's patients, known as "doll therapy." When Pretend Play Is Real For Alzheimer’s Patients explains that "[n]ursing homes and other senior facilities nationwide are using a controversial technique called doll therapy to ease anxiety among their residents with dementia. Senior care providers and experts say the dolls are an alternative to medication and help draw in elderly people who are no longer able to participate in many activities."
As elder law profs, we know how important it is to educate our students about autonomy and avoiding stereotypes, so some may be wondering about the therapeutic benefit this therapy might have with elders. An expert from the Alzheimer's Association expounded on that point: "[c]aregivers aren’t trying to make their charges believe the dolls are real infants, and they don’t want to infantilize the seniors ... They are just 'trying to meet them where they are and communicate with them in a way that makes sense to them.'” The article refers to some studies on this therapy, features stories of individuals with family members who have undergone the therapy and discusses some of the concerns about such therapy such as the perception that may arise as a result of elders playing with dolls.
The story made me think of Paro, the therapeutic robot which is used for some similar reasons, such as "to reduce patient stress... stimulates interaction between patients and caregivers... and improves the socialiazation of patients with each other and with caregivers...."
Sunday, October 2, 2016
We have blogged on a number of occasions about the importance of caregivers. Kaiser Health Network (KHN) recently ran a story, A Practical To-Do List For Family Caregivers. The story starts by sharing experiences of an attorney who is the caregiver for her parents. "On several occasions, doctors have treated this accomplished lawyer like she was an interloper — not the person to whom her elderly parents had entrusted health care and legal decision-making."
Citing to the National Academies report on caregiving (which we blogged about previously), the KHN article offers some "recommendations ... extrapolated from its findings."
- The caregiver needs to make sure that her status as caregiver is noted in the medical records of parents. "Thirty states, the District of Columbia, the U.S. Virgin Islands and Puerto Rico have now passed versions of the Caregiver Advise, Record, Enable (CARE) Act, drafted by AARP, which calls for information about family caregivers to be included in hospital medical records.givers should double check that the doctors have their info and lists them as the emergency contact."
- The caregiver needs to make sure she is capable of providing the needed care and her tasks incorporated into the parent's care plan.
- The caregiver needs to be trained on how to do the tasks (especially medical ones) she will be completing.
- The caregiver needs access to her parent's medical info (make sure the parent has ok'd access) and
- The caregiver should know and connect with helpful community resources.
Tuesday, September 20, 2016
While we are on the subject of caregivers (in case you missed yesterday's post ....) I was interested in the article published in the NY Times earlier this month on the impact caregiving has on caregivers. After all, it is a 24/7/365 job. Love and Burnout: Caregivers, Too, Need Care discusses both the emotional and financial costs of caregiving. "Though caregiving can be a profound and moving journey, caregivers’ needs are often overlooked. The health care system is mainly focused on patients; caregivers who are slowly burning out can slip by unnoticed until it is too late."
We have all seen studies about the physical manifestations of stress, but do we all realize that the physical impact can continue long after the stress is gone? "Researchers have found that the human immune system can be weakened by stress and strain for up to three years after caregiving ends. As a result, caregivers can be more prone to having serious illnesses. Yet they rarely complain."
Caregivers are true superheroes for what they do, but even superheroes can benefit from help (after all many superheroes have sidekicks or other superhero pals!) The article offers information about help and services available to caregivers, from information, to support groups, to resources to respite care.
Ever thought of which caregivers might be more affected by the role of caregiving? The article explains that "[m]en, who generally have smaller networks of friends than women, are at even greater risk. “They are less likely to maintain relationships and seek help,” said Zaldy Tan, medical director of the UCLA Alzheimer’s and Dementia Care Program. 'They’re less prepared for the caregiving role. So they have a higher burden and burnout rate.'"
Burnout is a real thing and manifests itself in a variety of physical symptoms. The article offers that the best way to combat burnout is to have help. "Perhaps the best antidote to burnout, many experts say, is building a team, rather than handling everything yourself." But there is a risk in assuming that the family will automatically pull together. "The best family teamwork involves meeting, talking and sharing responsibility ... One team member, for example, can handle medical appointments, another might be good at preparing meals. 'Have weekly phone calls if you’re in crisis....'"
Regardless of the planning, it's not going to be an easy job to be a caregiver. But it is going to be an important one.
Thursday, September 15, 2016
One of our recent grads sent me an article about a new design for an ALF, This Assisted Living Facility Is Designed To Look Like Homes On A Golf Course. Another article, published in the local newspaper, the design is for residents with dementia. Svayus takes a different approach to Alzheimer's explains that this ALF is a place out of time
What they’re about to enter is a world more reminiscent of one that existed in the 1930s and 1940s. The exteriors of the residences are designed to look like homes commonly found during that time period, down to the color of the paint.
The world of Svayus houses 22 residents, most of whom have Alzheimer’s disease. As the disease progresses, Makesh said, people begin to revert back to their childhood. Svayus serves as something of a time capsule.
The reasoning behind this is emotional: to provide the residents with a familiar "feel" to their residences. The company has several ALFs designed with the residents in mind. One of them offers this:
Entering into Svayus is like walking outside. In addition to the period-accurate home exteriors, residents are also greeted with a grass-green floor, (artificial) plants, a small waterfall and audio of birds chirping. Overhead is the sky ceiling, designed to help with residents’ physiological clock. During the day, residents will see a sunny sky, even on the grayest Northeast Ohio days. ...
At night, the sky ceiling darkens and the porch lights come on.
“Every little thing you see, the wall color, the paint, actually has a therapeutic benefit, a therapeutic value" ...[according to the CEO].
Different aromas also are pumped into the air, providing a therapeutic benefit. Peppermint and frankincense, for example, help with anxiety.
As far as the ALF designed as though the residents live on a golf course, "rooms designed to look like houses on a golf course. Not only is this aesthetically pleasing, the point is to help residents feel more at home. Compared to your average retirement or assisted living facility, this place looks so much more inviting and calming. The hallway features a ceiling painted like the sky, porches and even porch lights that turn on at night."
Very cool idea. I wonder what one designed for the Boomers would look like? (tie-dye curtains, peace symbols, Beatles posters anyone?)
Wednesday, September 14, 2016
The American Journal of Alzheimer's Disease & Other Dementias ran an article on Pain in Hospice Patients with Dementia: The Informal Caregiver Experience. The abstract explains:
Introduction: At the end of life, patients with dementia often experience high levels of pain due to complex interplay of disease processes and numerous barriers to symptom management. In the hospice setting, informal caregivers play an essential role in pain management. This study describes their experience managing pain in hospice patients with dementia.
Methods: We conducted a qualitative analysis of audio-recorded interviews with informal caregivers of hospice patients with dementia who had chosen pain as the challenge they wanted to work on within a problem-solving therapy intervention.
Results: The thematic analysis of sessions with 51 caregivers identified 4 themes: difficulty in communicating with patients, lack of consistent guidance from health-care professionals, perceived uncertainty about the etiology of pain, and secondary suffering.
Discussion: Our findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.
I thought the points made in the discussion were well-taken. Think about a person with dementia and her ability to communicate regarding her pain level.
[The study] findings indicate that caregivers of persons with dementia in hospice face numerous and significant challenges when it comes to managing their loved ones’ pain. Several studies have already demonstrated that the needs of people with dementia at the end of life are not fully met and that caregivers require more support at this time as they may feel exhausted and alone. Furthermore, while communication between health-care providers and caregivers is important, it does not often take place at times of crisis, affecting overall quality of care... Caregivers described uncertainty about the etiology of pain, difficulties in communicating with patients, lack of consistent guidance from health-care professionals, and secondary suffering as the factors that prevented them from properly and effectively managing pain in their loved ones. Thus, these findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.
Well worth reading!
Friday, August 19, 2016
I'm always just a bit suspicious of books that promise to make me laugh. I think it is because I like to be surprised by humorous moments, rather than feel duty-bound to chuckle, guffaw or giggle.
Nonetheless, I succumbed to the promise in the blurb for Michael Kinsley's 2016 book, Old Age: A Beginner's Guide, that it was a "surprisingly cheerful book ... and a frequently funny account of one man's journey to the finish line."
And I'm glad I did. I did indeed laugh, and at the most surprising of moments, as when he described the need to avoid the doors of his refrigerator because of the magnets that might interfere with the technology in his brain used to keep symptom of Parkinson's Disease at bay. He has the knack of making wry observations about his own mortal state to think broadly about what it is for all of us to age. I can see the short essays that make up this book being useful in a class on elder law or estate planning.
His words are perhaps most poignantly relevant to boomers. For example, on a goal of living longer, he writes:
Even before you're dead, you may want to ask yourself whether this is what you really want. Is being alive all that desirable if you're alive only in the technical sense? Millions of boomers are watching their parents fade until they are no longer there. As they approach their seventies, they start observing their own peer group losing their collective marbles, one at a time. And they reasonably conclude that the real competition should not be about longevity. It should be about cognition.
But he doesn't stop there, exploring other, potentially more important goals for the competitive boomer generation to consider.
This is a short, deep book. And I recommend it, not least of all because it gives readers welcome opportunities to smile.
Tuesday, August 16, 2016
Last weekend, the Arizona Republic newspaper carried a Question and Answer column that caught my eye. The question began:
My grandmother lives in Scottsdale, and my wife and I live in Chicago. We only visit her two or three times a year. Although we thought my grandmother was still able to manage her financial affairs, she recently called us to say that she was being evicted from her Scottsdale home for nonpayment of HOA dues. My grandmother owns her $450,000 hoe free and clear....
HOA dues only totaled $700 originally. After the late charges, interest, and legal fees, however, there was almost $8,000 owed at the foreclosure sale two weeks ago.
How often do crises involving aging loved ones begin with the words "I thought she was doing well living alone until...?" Here the concerned grandson jumped into action and the consumer advisor suggested a range of options, including working with the "investor" to resolve the ownership and equity issues. For more you can read Grandmother Loses Home to HOA Fees on the PressReader service for the Arizona Republic, August 14, 2016.