Dancing with Parkinson’s Disease

by Janet Simpson Benvenuti

On October 2nd, 200 filmmakers representing more than 50 countries will arrive at the Mill Valley Film Festival in San Francisco. Since 1977, this festival has celebrated the best in American independent and foreign films, launching new filmmakers and films including Slumdog Millionaire, The King’s Speech, The Artist, Argo, and 12 Years a Slave. This year among the festival goers will be one of the most acclaimed modern dancers, David Levanthal, who will be screening his film entitled Capturing Grace.

Capturing Grace is a love story about professionals whose love for dance inspired them to share their gifts with people living with Parkinson’s Disease, a movement disorder. The story began thirteen years ago at a dance studio in Brooklyn, NY, home of the renown Mark Morris Dance Group (MMDG). There David Levanthal, one of the MMDG performers, created and led a dance program called Dance for PD. Since its inception, the program has become an international success, engaging professional dancers worldwide in bringing the joy of dance and movement to those living with disease.

Every 9 minutes another person learns that they have Parkinson’s disease, and the symptoms of the disease, shaking hands, tremors, stiffness, can lead to social isolation and a lower quality of life. Aside from the physical benefits, Dance for PD returns sense of community, collaboration and fun for teacher and student alike.

Today, Levanthal is working full-time to expand the reach of Dance for PD. Capturing Grace, is his call to action. See the film and consider supporting Levanthal’s mission here. If you know someone living with Parkinson’s disease, look for this program locally as many assisted living communities and hospitals, such as Emerson Hospital, have incorporated Dance for PD into their health and wellness offerings.

Shall we dance?

c 2014 Circle of Life Partners, LLC. All rights reserved.

Alive Inside – Music and Memory


by Janet Simpson Benvenuti

This year at the Sundance Film Festival, the 2014 Audience Award was given to a documentary about Music and Memory called “Alive Inside.” The film is a story about the power of music to reach into the minds of elderly men and women, enriching their lives and reconnecting them to their personal music history. Not long ago, a clip from the film about 90-year old Henry became a YouTube sensation. The full documentary began showing in Landmark Sunshine theaters around the country starting July 25th in NY, Toronto and Washington; August 1st in Boston, LA and Philadelphia; and August 22nd in Dallas, Atlanta and Seattle. To find where the film is playing near you, click here.

If you don’t get to the theater, you can help support the lives of seniors across the country by donating money or your unused ipods to the non-profit Music & Memory led by Dan Cohen. Dan’s organization also provides training and materials to healthcare professionals who want to offer the gift of music to those under their care. You may learn more here.

The next time you visit a relative living with dementia, try to engage them with music. As you may know, my mother lived with Alzheimer’s disease for 17 years and in her later years, we played the music she loved routinely during our visits. Perhaps that’s why she retained cognition through the end of her life. Here is one of her favorites from the Andrews Sisters. What music would reach your loved ones?

Of Mice and Women: His and Her Healthcare

Lab Miceby Janet Simpson Benvenuti

What do mice have to do with men and women’s health? It turns out, nearly everything.

Here are a few surprising facts.

  • Most medical research begins in laboratories using mice. Until 20 years ago, researchers used only male mice, finding the hormonal cycles of female mice an ‘unnecessary’ complication in experimental design.
  • Despite laws today that require all government-funded research to include females in animal and human studies, the sex of the animals is not often stated in published results.
  • Further, when clinical trials begin, researchers frequently do not enroll adequate numbers of women or, when they do, they fail to report data separately by sex.

Why does sex matter? Because many diseases, medications, and medical devices impact men and women differently. Here are just a few examples.

Perhaps you saw the report filed by Leslie Stahl on 60 Minutes about Ambien, a commonly prescribed medication, that found women need half the dosing typically recommended by their physicians. Do other drugs need to be adjusted? Most likely, we just don’t know which ones.

Perhaps you know that more women die each year from lung cancer than from breast, ovarian and uterine cancers combined, and that nonsmoking women are three times more likely than nonsmoking men to get lung cancer. We still don’t know why.

Perhaps you  watched Dr. Johnson’s TED talk, where she explained sex differences in heart disease and depression, cancer and Alzheimer’s disease and how attention to sex differences in medical research that is already funded and underway will benefit both men AND women’s health.

What does this mean for you and your family?

Make it a habit to ask your physicians if the treatment, diagnostic tests, or medications being prescribed work differently for women and men. They may not know the answer when you ask, but the question may prompt them to find out.

Read “Why Women’s Health Can’t Wait” written by the Connor’s Center for Women’s Health and Gender Biology. Join their Call to Action to hold federal agencies, medical device and pharmaceutical researchers accountable for how their studies address sex.

Consider supporting the work of Dr. Johnson and her colleagues, tireless advocates for Women’s Health, as they work with Congress and leading research institutions to address this issue.

Collectively, we can improve the health of our mothers and grandmothers, sisters and daughters as well as the men in our lives by insisting that the science behind health care accounts for sex differences.

Who knew that mice were so important to our health and well-being?

© 2014 Circle of Life Partners, LLC. All rights reserved.

 

 

 

Broads Talk Money, Careers and Families

Professional Womenby Janet Simpson Benvenuti

On June 5th, I’ll be joining a panel of financial advisors in Boston to discuss the unique financial challenges that women need to manage over the course of their lives and careers. As members of 85 Broads, we are committed to the economic empowerment of women. As founder of Circle of Life Partners, I’m committed to helping adult children – men and women – successfully support their aging loved ones without negatively impacting their careers, health or financial well-being.

Free and open to non-members, encourage the women in your life – colleagues, spouses, sisters, and college-aged daughters – to join us and learn how best to avoid or navigate financial mistakes and increase financial confidence. Click HERE to register.

June 5th, 5:30 – 8:00 PM
Federal Reserve Bank of Boston
600 Atlantic Avenue, 4th Floor
Boston, MA

Panelists:
Cathy Burgess, Morgan Stanley, CFP, ADPA
Janet Benvenuti, Circle of Life Partners, Founder
Deirdre Prescott, Sandy Cove Advisors, President & Founder
Dionne Gumbs, Wealthrive, Founding Partner

Moderator:
Kathleen McQuiggan, 85 Broads Boston Chapter Co-President

© 2014 Circle of Life Partners, LLC. All rights reserved.

Know Your Money: The True Cost of Long Term Care

Calculating the Cost of Care

Calculating the Cost of Care

by Janet Simpson Benvenuti

Recently I asked our financial advisor to do some retirement planning and estimate expenditures through the end of my life. To my surprise, my husband and I both are going to die at age 87 (for the record, I will predecease him), spending $100k/year in today’s dollars for each of the last three years of life. Amused, I wondered where I would find care for $100k in Massachusetts. The last assisted living facility with a memory unit I visited cost $8700/month without hairdressing or a personal care attendant. I’m sure to need both. And only three years of care? Prudently, one would plan for at least six, and with any history of longevity or cognitive impairment, I would plan for 12.

That same day, I spoke with a different financial advisor whose 91 year old client has Alzheimer’s disease. He and his spouse reside in Connecticut and spend a more typical $15,000 a month for assisted living with an aide for additional support, $180,000/year. When I reminded that advisor that home care for someone with Alzheimer’s disease is tax deductible as a medical expense, she expressed surprise, unaware of IRS Publication 502.

What’s going on here? Why are financial advisors so ill-informed about the true cost of care?

Quite simply, few people, including financial professionals, understand the extraordinary cost of long-term care and the options available to manage expenditures wisely in the last decade of life.  Effective financial planning requires more than just the skills to create an investment portfolio or project future expenses, but integrated knowledge about finance, elder law, insurance, health care and inexpensive community resources for aging in place. It’s why I founded Circle of Life Partners.

I’ve been guiding families through the aging journey for years, yet I still find the numbers shocking. Recently, I received a call from a family of three adult children who were growing concerned about their mother’s ability to care for their father safely at home. He was three years past his initial diagnosis of Alzheimer’s disease and the family felt he might be best served by moving into an assisted living facility with a memory unit although he did not have long-term care insurance. I calculated the price tag for nine years in a highly-regarded memory unit and subsequent skilled nursing care, $835,000- $1.25 million. Using an adult day health program or a part-time companion suddenly seemed a much more reasonable option.

Last week, I wrote about the Bipartisan Policy Center (BPC) launch of a new initiative on long-term care led by former Senate Majority Leaders Tom Daschle (D-SD) and Bill Frist (R-TN), former Congressional Budget Office Director Alice Rivlin, and former Wisconsin Governor and Secretary of Health and Human Services Tommy Thompson.  BPC’s Long-Term Care Initiative will propose a series of bipartisan policy options in late 2014 to improve the quality and efficacy of publicly and privately financed long-term support services. Read the white paper here to learn more and follow their work @BPC_Bipartisan.

Let’s hope they can get their arms around this issue. Until they do, I’ll continue guiding families to the resources they need, until I need the same support, at age 84.

©2014 Circle of Life Partners, LLC. All rights reserved.

Listen to Bipartisan Policy Center discuss Long-Term Care

Lonely adult child and parentby Jan Simpson Benvenuti

On Monday, April 7th at 1pm EST, the Bipartisan Policy Center in Washington, D.C. will host an event to discuss sustainable ways to finance and deliver long-term care services. The numbers are staggering. Today, there are 12 million seniors, veterans and disabled adults who need long-term care support and services; that number will jump to 27 million by 2050. As anyone who has cared for a loved one can attest, the time, energy and expense involved in supporting an ill family member can easily deplete a family’s resources, compromise the health of the family caregivers, and disrupt careers and relationships. Listen to the broadcast here.

 

© 2014 Circle of Life Partners, LLC. All rights reserved.

 

The Genius of Marian


by Jan Simpson Benvenuti

Last October, I attended a research symposium hosted each fall by the Cure Alzheimer’s fund. I arrived early to see a film entitled, The Genius of Marian, a documentary that follows Pam White in the early stages of Alzheimer’s disease as she and her husband adjust to the changes that enfold their lives. Daughter of artist Marian Williams Steele, Pam was working on a memoir about her mother when she was diagnosed with early-onset Alzheimer’s disease. Vivacious and engaging, Pam’s early journey with illness is captured in film by her son as her husband, Ed, assumes the role of full time caregiver. Unlike the Notebook or other movies depicting Alzheimer’s, this film captures the ebb and flow of a family adjusting to a “new normal” without the distortion of reality required to sell tickets.

The Genius of Marian is being shown throughout the country and it comes to Boston, January 22-30, 2014. If you work as a healthcare professional or know someone recently diagnosed with Alzheimer’s disease, I highly recommend seeing this film. You may purchase tickets for the Boston event here. If you are interested in hosting a screening of this film for your employer or non-profit, make your request here.

And, of course, if you want to support researchers working toward a cure, consider a donation to the Cure Alzheimer’s Fund, the Alzheimer’s Association or the McGovern Institute for Brain Research.

c 2013 Circle of Life Partners, LLC. All rights reserved.

Advanced Style, Fashion Over 60+

by Jan Simpson Benvenuti

My teenage daughter would tell you that I’m fashion challenged. Although I remind her that I’m at an age when comfort, not fashion, is my priority, she is factually correct. I have little interest in following fashion trends and I keep my clothes far beyond their expiration date. I do own suits and silk blouses along with dresses appropriate for church or a cocktail party, but my daughter and her 87-year old grandmother have something that I lack, a unique sense of style. My daughter can wear vintage or designer clothing and look ready for Vogue while her grandmother, dressed over Thanksgiving in a green corduroy jacket with a tweed cap and an orange scarf, looked, and likely felt, 20 years younger than her chronological age. Both light up a room by just walking into it.

Last year, I read about Ari Seth Cohen who set out to photograph older women with style. His blog and recently published book are called Advanced Style. You might find his photographs inspiring, just like the women in your life.

© 2013 Circle of Life Partners, LLC. All rights reserved.

Palliative and End-of-Life Care

Physicians and Nursesby Jan Simpson Benvenuti

Last week I had the privilege of being the keynote speaker at the Washington End of Life Consensus Coalition annual conference. The room was filled with palliative care and hospice specialists – physicians and social workers, nurses and chaplains – each of whom cares for patients living with life-threatening illnesses. I was invited to offer the family caregiver’s perspective, to convey the lessons I learned while supporting my parents through the end of their lives. Because I have spent more than 25 years in health care and we cared for my father and mother living with cancer and Alzheimer’s disease, respectively, at home, my talks often create a bridge between the way the medical system intervenes with patients and the reality of their home lives. I had planned to deliver my usual speech about navigating the aging journey but for this audience, I had another mission: I wanted these clinicians to feel the experience of being the family caregiver, bouncing from specialist to specialist,challenged to make medical decisions regarding chemotherapy and surgery, feeding tubes and ventilation, without the benefit of consistent medical counsel. For when my parents were ill, palliative care specialists were not prevalent in hospital or medical settings.

What is palliative care? It is a team approach for caring for a seriously ill patient that focuses on alleviating symptoms such as pain, nausea and fatigue while helping patients and their families understand treatment choices and options. You can learn more here. Nurses and physicians, pharmacists and others trained in palliative care practices are a useful resource for family members struggling to understand the arc of an illness and how to best care for their loved one. This specialty is relatively new, but one that you should inquire about as your parents and other loved ones navigate the later stages of their aging journey.

I began my speech by introducing the clinicians to my family and I did my usual gig with good humor, highlighting the legal, financial, familial and housing decisions that challenge families as their parents age. Then I circled back to the medical system and my personal story. For the first time, in nearly five years of public speaking, I decided to share my parents’ end of life experiences publicly, knowing that this audience deals with life and death decisions daily. I read two pages from Chapter 20 of my book, Don’t Give Up on Me!, conveying a conversation I had with a physician regarding how Alzheimer’s disease advances and the decisions I might have to make on my mother’s behalf. I noted that the conversation took place nearly three years before my mother passed away and reminded them that preparation for the end of life doesn’t begin when someone is literally at the end. I proceeded to share anecdotes from the time of that conversation through the end of her life and I watched as the room grew increasingly more quiet and still. I tempered the anecdotes with humor, creating vivid imagery, juxtaposing preparation for a Valentines Day party for 30 six-year olds with a testy telephone conversation with my mother’s physician regarding potential surgery. Slowly I brought them to the end of her life and her last ambulance ride to the hospital with the EMTs who honored her do-not-recussitate order only to encounter the emergency room physician who did not, who placed my mother, against her wishes, on a ventilator. I stopped my storytelling there and in the brief silence that followed, the audience responded in a way that I did not anticipate.

We know that clinicians are trained to separate their emotions from their clinical judgment, allowing them to work daily surrounded by disease, pain, sorrow and death. Without that cognitive ability to compartmentalize their feelings, to objectify their patients somewhat, they would be unable to function optimally. Yet, at the end of my story, these highly trained clinicians did something I did not expect. They cried.

Over the years I’ve developed great affection for health care professionals. Admittedly, a few are callous and inattentive, but the majority work long hours under difficult circumstances to provide the best possible care for their patients. Helping families understand how to interact with the medical system, to fill in knowledge gaps about insurance and disease, advance directives and health maintenance is the reason I founded Circle of Life Partners. Most of the time, I speak before families and professionals outside the healthcare system. But sometimes, when the medical community invites me to join them, I use my experience and yours to elevate the voice and concerns of families, to showcase the gaps in care that only they can close.

Following my speech, a geriatrician gave me the greatest compliment when he said, “You reminded all of us that when a patient receives a diagnosis of cancer or Alzheimer’s or any life-threatening illness, the entire family receives the same diagnosis.” That’s so true.

© 2013 Circle of Life Partners, LLC. All rights reserved.

Home Care, Adult Day Health and Supportive Living

sanborn placeby Janet Simpson Benvenuti

Each month I visit assisted living and continuous care retirement communities to learn more about housing options for seniors. While most are well-managed, beautifully-appointed communities replete with book clubs and outings, dining rooms and transportation services, I remain uncomfortable that these communities are financially out-of-reach for the majority of moderate-income families. Last week I visited Reading, Massachusetts, population 24,747, to meet Jacqueline Carson, executive director of Sanborn Place, an integrated care solution for lower income seniors and adults with disabilities that includes home care, adult day services, and a continuous care housing option. Recently, Sanborn Place has received national attention and will be featured in Dr. Atul Gawande’s next book on elder care and end of life.

Here are the three programs Jacqui supervises:

Sanborn Home Care provides home care services in short increments, if necessary, working in partnership with the local Visiting Nurses Association, the VNA of Middlesex East.

Sanborn Day is an adult day health center with capacity for 75 seniors or younger people with disabilities. Visually resembling the lobby of an upscale hotel, the center provides breakfast and lunch, exercise classes in partnership with the local YMCA, physical therapy, medication supervision, counseling for caregivers, and activities including a pool table, crafts, and computer games such as the Dakim Brain Fitness Program. My visit interrupted a game of charades with a roomful of joyful elders and it included an unanticipated discussion about the Massachusetts governor’s race with a well-informed senior.

Sanborn Place is a non-profit, federally funded facility for seniors whose incomes do not exceed $33,050 (single) or $37,800 (couple). Upon arrival, I was greeted by four older women sitting in the lobby who proudly revealed their ages: 93, 95, 87 and 83 as they awaited their friend, age 102, who was taking a nap. The community has 73 units, half assigned to seniors who require daily support, others for those needing weekly support or none at all. Each apartment includes a living room and kitchen with a private bath and bedroom not unlike those in high-end communities. Seniors remain in their apartment until the end of their lives.

Payment for these services comes from many sources including Medicare (for skilled nursing care and PT or OT services), HUD, the Veterans Benefits, and Mass Health.

While many communities offer similar programs, what’s unique is the integrated way that care is provided and the number of private citizens involved. Jacqui oversees the delivery of these three programs supported by a stellar team of professionals and individuals like brothers Gregg and Bruce Johnson, who created DKJ Foundation in honor of their father to raise funds for Sanborn Place. You may learn more about their foundation here.

As the tsunami of boomers age, many without enough family members to fill the role of caregiver, I remain encouraged and inspired by people like Jacqui, Bruce and Gregg who take responsibility for the well-being of all of the older citizens in their town and do so with a passionate commitment to help them remain a vibrant part of the community they’ve always called home.

© 2013 Circle of Life Partners, LLC. All rights reserved.