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.

 

 

 

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.

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.

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.

ConnectedVisits – Telehealth for Family Caregivers

by Janet Simpson Benvenuti

Each month I meet or speak at length with a dozen or more entrepreneurs across the country working on innovations in health care and healthy aging. Periodically, I will feature one of these businesses to keep you informed about new products or services that may help you better support your parents or grandparents as they age.

One new venture is ConnectedVisits founded by Dr. Krishna Gazula, a brilliant man whose passion is to help families and health care teams communicate more effectively. Like some of you, I was the “designated daughter,” the family member who drove my parents to their medical appointments and discussed their care with their physicians. With ConnectedVisits, other family members or health care specialists such as a social worker or nutritionist easily could have joined those conversations, improving communication among all and saving me considerable time and energy repeating the physician’s guidance to everyone involved with their care. When needed, my sisters and brothers also could have attended some of those appointments virtually and their physician would have had ready access to x-rays and other medical information on-line while talking with us.

ConnectedVisits intends to raise funds next month to further develop their product. You can follow their work here.

Have you had any experience with telehealth?

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

Fit or Flabby? Your Insurer Wants to Know

imagesCAHGPGB7by Janet Simpson Benvenuti

In Florence, Italy, my 22-year old son joked about the abs on Michaelangelo’s David, his own physiology sculpted by the intense training regimen of a college athlete. While our physiques pale when compared to the ideal or even our twenty-something bodies, swimming or golf, tennis or yoga, cycling or walking will help keep us and our parents fit. Some of you may already be wearing a bracelet from Fitbit or Up by Jawbone to monitor your daily routine or using apps such as MyFitnessPal. With the roll-out of the Accountable Care Act, expect your health insurer to request four health statistics – height, weight, blood pressure and waist size – and future insurance premiums through your employer will be adjusted based on your overall fitness and health.

If you’re looking for a new way to stay fit with friends, check out Vizifit, a wellness venture being launched in Silicon Valley. Vizifit offers friends the opportunity to take exercise classes together on-line, regardless of where each friend is located. Yoga, Zumba, cardio and other classes are offered and during your workout, you see only the instructor and your friends. Best yet, you can interact with your friends and talk among yourselves without disrupting the class. The site is in beta-testing right now, but it sounds like a great way to exercise with long-distance friends or when you are traveling.

Have you considered getting your parents or older loved ones Fitbit or Up by Jawbone to self-monitor their sleep, eating and exercise habits? At present, these bracelets are being marketed only to young and middle-aged consumers, but the real health benefit may be for able-bodied seniors. Today, most products for our parents focus on managing illness, not wellness – alarmed electronic pill box, anyone? – it’s up to us to change that paradigm.

© Circle of Life Partners

 

 

 

 

 

 

 

 

Circle of Life Partners Goes to Italy – The Food

italy_rome_1280px[1]by Jan Simpson Benvenuti

As summer begins, I am mindful of the three tenets of healthy aging: food, fitness and family, each of which got my renewed attention during a recent trip to Italy with my husband and children.

Have you been to Rome? The Romans may drive wildly, but they certainly know how to prepare and enjoy food. Recently, a scientific study in Spain confirmed what Italians have known for centuries: the Mediterranean diet, rich in fresh fruits and vegetables, fish, nuts, olive oil and red wine, does indeed extend life and delay the onset and advancement of disease.  Our favorite restaurant, La Taverna dei Fori Imperiali,was a family-run trattoria near Piazza Venezia and the Tomb of the Unknown Soldier, the entrance hidden in an alley as narrow as my son is tall. The owner welcomed us warmly and offered to select the five courses and wine for our dinner, portions small by American standards, but sufficient to satisfy even my son’s 6’6″ frame. We lingered between courses for conversation and laughter, the pacing of the meal as unhurried as the Sunday dinners of my childhood. In addition to our trending slow food movement in America, I’d like to propose a slow dining movement.

In the States, you should expect to see increased attention to good nutrition as the health care system moves toward creating medical homes and boomers strive to maintain their health. Specialists, such as oncologists, have long included nutrition as part of the healing process, but you don’t need a hospital stay or a serious illness to find guidance.  Watch as:

  • Primary care practices, such as Iora Health, and neighborhood clinics add health coaches and nutrition counseling
  • Grocery stores offer nutritional guidance, such as the Stop-and-Shop near my home where one may schedule  appointments with a nutritionist on Thursdays
  • Private nutritional coaches, like friends at Weiser Choices, expand their coaching practices
  • Employers add group fitness and health coaching such as ShapeUp to their wellness programs

I’m still waiting for the time when it becomes routine for physicians to hand patients a stack of recipes instead of writing a prescription for yet another drug. Until then, I recommend a trip to Italy.

Ciao!

©Circle of Life Partners

 

More Boston Seminars on Aging Parents: Navigating the Journey

by Jan Simpson Benvenuti

The fall has been busy as our Aging Parents seminars that bring the experts and families together continue to grow in popularity. My last two public programs offered in Boston for 2012 are noted below. I hope that you or your colleagues can join me.

Two weeks ago, I spoke to an overflow crowd of Harvard-educated executives as they shared their stories about navigating the aging journey with their parents and reflected on how to improve programs for employees within the organizations they lead. Last week, I moderated a panel in Wellesley, MA to help families better understand how to care for their older loved ones and themselves as they juggle work, family, and other responsibilities. This week, I’ll be moderating a program hosted by the Women’s Bar Association in downtown Boston on Thursday evening that is open to the public. And, on Saturday November 3rd, I’ll be speaking in another public event in Boston at the National Association of Healthcare Advocates’ Conference. If you have a personal interest in attending one of these programs on Aging Parents or if you know others who would benefit from expert advice for the price of a latte and a snack, please plan to attend if your schedule permits. Both events require registration, but last-minute registrants are welcome.

  • Thursday, October 25th at Baystate Financial, 200 Clarendon Street, Boston @ 5:30 p.m. Click here to register.

The Women’s Bar Association of Massachusetts is hosting this informative evening on Aging Parents: Navigating the Journey ™. As moderator, I will be joined by Martha Payne, Financial Advisor, Baystate Financial Services; Dianne Savastano, Principal, Healthassist; and Kristin Shirahama, Esq., Partner, Rosenberg, Freedman & Goldstein LLP. Proceeds from the sale of my book Don’t Give Up on Me! will be donated to the WBA’s Elder Law Project.

  • Saturday, November 3rd at the Hyatt Regency in Boston @ 11:30 a.m.  Click here to register.

The National Association of Healthcare Advocacy Consultants will hold its fourth annual conference in Boston. This three-day conference includes medical professionals and experts convening to discuss The Leading Edge of Reform: Roles and Goals for Healthcare Advocates. The Saturday program is open to the public for $25. My session will include a mix of families and the healthcare professionals who advise them. All workshop participants will receive a free copy of Don’t Give Up on Me!

I’m grateful that so many professionals donate their time and expertise to our educational programs. We are planning the 2013 calendar now, so stay tuned as we host programs in cities across the country.

 

© Circle of Life Partners LLC

 

Aging Parents: Navigating the Journey Seminars

Our mission at Circle of Life Partners is to provide the knowledge families need to navigate the aging journey with elders successfully. This month, I’m taking our program to executives at the Harvard Business School reunion, families in the town of Wellesley, MA and attorneys at the Women’s Bar Association. See below for the incredible people who will join me to share their experience and expertise with others.

On the Road Again…

Harvard Business School (not a public event)

Saturday, October 13th, 2:30-3:45 p.m. Aldrich 107

Executives attending their 25th through 45th reunions will participate in a discussion about the key decisions and resources available to navigate the aging journey with older loved ones. The panelists will include Rich Redelfs, General Partner, Foundation Capital LLC,; Jane Beule, Owner of Griffin Black, Inc., a financial advisory practice; and Ken Bacon, retired EVP of Fannie Mae’s $193 billion Multifamily Mortgage Business and Advisor to Stanford’s Center on Longevity. Follow me on twitter at @colpartners as I moderate the panel.

The following week, I’ll be moderating a public forum in Wellesley, MA sponsored by Princeton Alumni of New England (PANE), the Wellesley Free Library and the Wellesley Council on Aging. This program continues my series of public events that bring together local resources and families. The profits from any copies of Don’t Give Up on Me! sold during that event will be donated to the Wellesley Council on Aging .

Wellesley Free Library – A Free Public Event – Click here for more information.

Wakelin Room, 530 Washington Street, Wellesley, MA.

Wednesday, October 17th 7:00p.m. to 9:00 p.m.

The theme for this free public event is “Caring for Our Parents and Ourselves.” The panel will include four speakers: Dianne Savastano, RN, MBA and founder of Healthassist who will share tips for navigating the health care system; Jim Reynolds, CEO of Caring Companion Home Care, who will help families understand how to select a home care agency; Dr. Anne McCaffrey, Chief Medical Officer of the Marino Center for Integrative Health and Debra Brothers-Klezmer, BSN, who will share strategies for reducing the stress that often accompanies family caregiving.

If you’re in the area, stop by for what’s sure to be an informative and engaging conversation. No registration is required.

Dianne Savastano will join me on the road again the following week as we provide another program for the Women’s Bar Association of Massachusetts. Appropriately, this event includes panelists who will share cases that demonstrate how legal advice and financial planning can smooth the aging journey.

Women’s Bar Association – Click here to register for the event.

200 Clarendon Street, 19th floor, Boston, MA

Thursday, October 25, 2012  5:30 p.m. to 7:30 p.m.

Joining Dianne and me on the podium will be Kristin Shirahama, Esq., Partner at Rosenberg, Freedman, and Goldstein, who will describe a complex case involving disability and how she helped that family get the financial resources needed to care for that older loved one well through their later years. Martha Payne, a financial planner for Baystate Financial Services will provide guidance for how to prepare financially for the aging journey with one’s parents.

At Circle of Life, we are committed to your health and well-being. Construction of our new website is underway and until it is ready, we will continue to keep you informed about upcoming events through this blog. If you want to be on our  mailing list for a personal invitation, just post a reply.

© Circle of Life Partners

 

 

 

 

 

 

Nutrition for Healthy Aging: Beef Barley Soup

by Jan Simpson

When my parents reached their late seventies, I began to stock their freezer with home-made soups and casseroles. I used the excuse that it was easier to prepare a triple batch of soup or two casseroles and share with them than to make food for my family alone. One of their favorite soups was beef barley. Laden with vegetables, this nutritious soup provides a warm meal for lunch or dinner during the cool fall days or frigid wintry ones. Preparing a large batch and allocating the soup into containers that could be placed in my parents’ freezer provided them with a quick meal on those days when they felt too tired or too ill to prepare a meal for themselves.

Over the years, I’ve added specific spices and herbs known to support health to my recipes. For example, garlic, onions, and leeks rank high among the most effective foods that inhibit brain, lung, prostate, and breast cancers. Turmeric, mint, thyme, oregano, marjoram, basil, rosemary, parsley, as well as the vegetables celery, squash, and carrots, also have anti-cancer effects as described in an earlier blog post “Fighting Cancer.” I do not add salt nor do I use purchased beef collagen stock with its high salt content because a diet high in salt contributes to chronic high blood pressure, one of the causes of heart disease, stroke, kidney disease, and dementia.

This following recipe for beef barley soup is from the kitchen of a dear friend, Mimma Fitzgerald.

Ingredients:

  • 2-3, 1-1½ pound packages of lean stew beef, cut into cubes (½ inch)
  • 1 29-ounce can of tomato puree
  • 1 12-ounce can of tomato paste
  • 1 large onion (or garlic)
  • 7 ribs of celery and 10 medium carrots peeled chopped into bite-sized pieces
  • other vegetables e.g., green beans, spinach, butternut squash, yams as desired
  • 8 oz. (1/2 bag ) of pearl barley, rinsed in a colander to remove excess starch
  • ½ teaspoon of any of the following herbs and spices: parsley, mint, thyme, oregano, basil, rosemary, marjoram, or turmeric.

Directions:

  1. Using a large sauce pan, brown prepared stew meat in 1 teaspoon hot canola oil and set aside.
  2. Chop the vegetables and onion as above and set aside.
  3. Fill a large stock pot with 26 cups of fresh water (or beef stock), add tomato puree, tomato paste, vegetables, onion, herbs, spices, and barley. Bring to a boil and reduce heat. Cover and cook on medium-heat for 30 minutes.
  4. Add browned beef to the soup and let the soup simmer on medium-low heat for at least 90 minutes.
  5. Remove from heat and let cool for 20 minutes before filling pint- or quart-sized containers. Yield is 8 quarts of soup.

Stocking my parents’ freezer with containers of frozen beef barley soup that they could simply warm on their stove top and enjoy with salt-free crackers helped ensure that they would maintain a healthy diet even on days when they didn’t feel like cooking.

Do you have favorite recipes that provide healthy, easy-to-prepare meals for an older loved one? Share one with us to receive a free copy of Don’t Give Up on Me!

©Circle of Life Partners™