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      Inside the Dementia
     Epidemic: A Daughter's

      On Wall Street Journal best seller
      list (May 1, 2015)


    of's 2014 Top Alzheimer's Books for Caregivers

    Winner of the Memoir category of the 2013 Next Generation Indie Book Awards

    Winner of a Silver Medal in the Health/Medical category of the 2013 Readers' Favorite International Book Awards (and finalist in the Memoir category)

    Finalist, 2013 Eric Hoffer Book Award for Excellence in Publishing

    Winner of an Honorable Mention in the Life Stories category of the 20th Annual Writer’s Digest Book Awards 

    Finalist, 2013 Indie Excellence Book Awards

    Finalist, 2013 Santa Fe Writer's Project Literary Awards Program, Non-fiction category





    Inside the Dementia Epidemic: A Daughter's Memoir shares the lessons I learned over 8 years of caregiving at home and in a range of dementia care facilities. I describe not only what I learned about navigating the system, but how I learned to see Alzheimer's disease differently—not as a "long good-bye," as it's often called, but as a "long hello." Through caregiving, my challenging relationship with my mother was transformed, and I learned to enjoy and nurture her spirit through the last stages of dementia.

    Appendixes share facts about dementia that I wish I had known years ago, such as how to get a diagnosis of Alzheimer's disease; what medications are approved to lessen the symptoms of Alzheimer's disease; lesser-known risk factors for dementia; and possible antidotes. I include my favorite resources for caregivers, my source notes, and an index.

    Inside the Dementia Epidemic: A Daughter's Memoir is available in paperback and hardcover, as an e-book for Apple devices, the Nook, and Kindle, and on Kobo.

    Reviews and Testimonials

    Order the Book



    The photo at the very top of this page is of my mother, Judy, in 2010, smiling up at Suzanne, a massage therapist I hired who specializes in bodywork for elders.  Suzanne massaged her hands, arms, upper back and legs, talked to her, and played music for her.  [photo by Jason Kates van Staveren]

    Right: My mother at her 75th birthday party in 2007, three years after she could no longer live alone. A few days after this picture was taken she fell, fractured her pelvis and needed more care than her assisted living facility could provide. I had to quickly research alternatives.

    In 1996, Judy and her grandson, Andrew, age 1, on the shale beach outside the cottage on the lake in Upstate New York where she lived by herself for 25 years. It's his first visit, and she's showing him the "big lake water" and how to draw on the flat rocks with pencil-shaped pieces of shale. Her worrisome behavior starts around this time, but as her daughter I don't realize what is going on until much, much later.

    Above: My mother, age 74, and I at the cottage in 2006 with her old miniature Schnauzer, Trinka. I can see the stress of those early caregiving years in my face and in my extra weight. Little did I know how much I would learn over the coming years.








    Above: Judy, age 79, and me in early 2012 at the nursing home Judy moved into in 2010. Mom lived with advanced Alzheimer's disease and vascular dementia until she passed away in late 2012, but until the end she often shared her lovely smile. 


    Join the fight to stop Alzheimer's by 2020:



    For caregiver support and resources, visit the Caregiver Action Network. (Membership is free if you are a current family caregiver):


        The Purple Angel--a symbol of hope and dementia awareness

      Inside Dementia

       Welcome to my blog about dementia
       caregiving as a "long hello," not a
      "long good-bye" —how we can become
      "care partners" with our family members
       or friends who are living with dementia, and how we can care for ourselves. Living with Alzheimer's disease or another dementia is a long, hard road, full of grief, anger and despair, but life continues after a diagnosis, and so can moments of joy.

    Read more about my book, "Inside the Dementia Epidemic: A Daughter's Memoir," or order the book.

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                                      —Martha Stettinius 

    Entries in end of life (2)


    Palliative versus Hospice Care

    If you feel confused about the difference between palliative care and hospice care, as I did when I cared for my mother, check out my article below that summarizes a presentation yesterday by Dr. Gary Pasternak, a palliative-care physician in California who also helps patients who request physician-assisted death. Dr. Pasternak was the guest speaker on a conference call hosted by the National Association of Healthcare Advocacy Consultants

    A Week in the Life of a Palliative Care Doctor: What We Really Do  

    • What’s the difference between palliative and hospice care? 
    • Physician-assisted death:  How is his hospice embracing the 2016 CA “End of Life Option Act”?

    Speaker: Gary Pasternak, MD, MPH
    Dr. Pasternak is the medical director at Mission Hospice and Home Care and co-director of the Mission House, a large nonprofit residential hospice home in San Mateo, CA.

    What is palliative care?

    Palliative care means different things to different people and is practiced differently in different places. In general, it’s an approach that improves the quality of life of patients facing serious illness, and of their families; it addresses pain and discomfort due to physical, emotional, social, and spiritual causes. Palliative care can be offered at any point in the illness or condition and is not only for the end of life. (Unfortunately, it is often associated with DNRs.) It can be used in conjunction with care intended to cure the patient, and it does not hasten death. Palliative care can start way upstream with “life planning” to plan the person’s goals of care if they are in particular situations.

    Ways we describe palliative care

    --It attends to the whole person, to whatever sources of suffering are happening, including patient and family caregivers
    --Teams include different disciplines.  One of the best features of palliative care is its team approach:  social workers, nurses, doctors, spiritual counselors, volunteers, etc.
    --Hospital consults are often for symptom management or to help establish goals of care (wishes, hopes and dreams of patient and family)
    --The quality of teams depends on the resources given the team by the institution.
    --In outpatient care, in CA there are outpatient palliative care clinics, with patients referred by specialists. Cancer patients, for example, need support, durable POA, and advice re: counseling, child care, home care.
    --In chronic illness, the “sleeping dragon” is the demographic of millions of older people who will need ADL support for chronic illness, and we have very few resources.  Older people with dementia or ALS, for example, need symptom management as well as planning for the future.
    --In outpatient, the primary focus is listening and conversation, eliciting values and goals, understanding the narratives of the patients’ lives and how difficulties present themselves. It’s heavy on family systems, facilitating family meetings in the home and the hospital.

    Many specialists and health care professionals misunderstand palliative care and think it is only for the last few weeks of life.  For example, he sees bone marrow specialists who just won’t refer until way too late.  Doctors often don’t understand the non-medical aspects of suffering. Dying is not primarily a medical issue—it’s a life cycle situation. 

    But it’s getting better now that palliative care is a recognized field; it’s taken off in the last 5 to 10 years. Now there are thousands of board-certified palliative-care doctors.

    What he does as a palliative care doctor

    In his inpatient hospice facility, he spends 90% of his time with patients and families, but many palliative-care doctors in hospice focus primarily on administrative tasks.  A home visit typically takes him 1 to 2 hours, with no pressure to make it shorter. Their model is continuity of care, to make transitions as smooth as possible, with as much continuity of staff as possible. He is very involved with the “End of Life Option Act” in CA for physician-assisted death (see more below).

    How is hospice different from palliative care? 

     Hospice is a subset of palliative care. Unlike the broader definition of palliative care, which offers relief from pain and distress even when care is focused on a cure, hospice care focuses on the final hours, days and weeks of life for patients with less than 6 months to live. The average stay in hospice is 3 weeks, which is not nearly long enough to be of maximum help.

    Patients think that hospice is “where you go to die,” but hospice is a philosophy and structure of care, mostly driven by Medicare rules passed in 1983. A lot of what we do is to try to explain prognosis. Most hospice is provided at home, but hospice is also available in hospitals and in all kinds of long-term care facilities. 

    Four levels of hospice support: 

    1. Routine (in home), with a hospice team. Only a few hours a day, and sometimes not every day. (Some hospices have deep pockets and provide a health aide at home every day, while others cannot.)
    2. Continuous care: More hours in the home but not 24 hours a day; usually 8 hours of care (more if that particular hospice has the funds)
    3. GIP (general in-patient):  Patient is hospitalized with hospice care, if they need hospital care
    4. Respite care (patient stays in a skilled nursing facility for up to 5 days to give the family a rest)

    Compare your local hospices!

    It’s good to know how your local hospices are different from one another. For example, will this hospice provide such and such a medication, or do they have volunteers in the home?  Sometimes you can match a patient with the most appropriate hospice.  For example, most hospices do not have a doctor visiting patients, but some do.

    Hospice support for family members

    I asked him how his hospice supports family caregivers at the death bed so they do not feel alone with the death process and, well, traumatized.  I told him about how I felt alone with my mother when she declined suddenly over 3 days in her nursing home, how it was just me and my husband and a few friends visiting us while the nursing home staff was busy with other things, and how it was the weekend so we only had 1 day of hospice support. It was terrifying because I did not know what was normal in the dying process and what was not; we often feared, for example, that Mom needed more morphine, so we had to go hunt down the nursing staff.

    Dr. Pasternak replied with compassion, stating that in his agency, his nurses try to be there during the active dying phase, to hold hands and explain what was going on.  He said, “Lots of abandonment can happen in health care, and if family members feel abandoned, then it’s my belief that hospice has failed”.

    He suggests that if your loved one lives in a facility, ask ahead of time what support will be available when they are dying. Also ask hospice for continuous care.

    (Read more about my experience with hospice and nursing home care with my mother's death)

    Physician aid in dying

    Dr. Pasternak is one of 2 doctors in his hospice program that supports the 2016 CA “End of Life Option Act” if patients request that assistance.  He says that their training in palliative care at first made many doctors feel like aid in dying is a “failure” of sorts.  But his patients have persuaded him about the principle of autonomy, that they deserve to control the circumstances of their own death. He insists on being in the home if medication is taken to hasten death, and he insists on hospice being there. The law requires that patient has to self-ingest.  He says that these deaths are almost always incredibly peaceful. 

    The end of life medication is usually a sleeping pill (Seconal) and can be obtained in about 2 weeks. There has to be a second physician to give a second exam for the drug to be approved, but the process is not onerous.  Kaiser has the pharmacist come to the home and educate the family. 

    Now the price of Seconal is $4,000, jacked up by the drug company after CA passed its law. He notes significant social justice issues around the ability to afford these medications. 

    Questions from the listeners:

    From a former hospital chief financial officer:  How do we advocate for clients when doctors or facilities suggest that a patient take the medication to save the facility money (because they will die in 2 weeks rather than drive up costs for several more months of life)? I have seen great pressure to decrease the cost of care. 
    His response:  You can look at this from both sides of the argument.  He has never seen this happen, and data does not back the worry that it would happen frequently.  His policy is that he never says to a patient, “Have you considered the end-of-life act option?” He only mentions the assisted-death option if a patient asks him about it, so in that way his conscience is clear. He is concerned, however, about the social-justice issue that less educated patients don’t even know that physician assisted-death is an option. He thinks that the larger issue is lack of options for healthcare in general--for example, the complete inadequacy of funding for elder care in their last years of life.  

    What is “palliative sedation”?  His response:  Palliative sedation provides medication to treat intractable symptoms, without the intent for the person to die; it’s just to deal with pain that cannot be managed without sedation.



    Will Your Doctor Be Reimbursed for End-of-Life Planning?

    If you are caring for someone who has early-stage dementia, it's a good idea to sit down with them and their doctor to talk about their wishes for the end of their life. I know it's hard, but the earlier you can do this, the better. And if your loved one is living with more advanced dementia, it's equally as important that you meet with their doctor on your own to discuss end-of-life planning. Such discussions are extremely important not only for your loved one but for your own well-being in the future when you may face heartrending decisions about their care. 

    Research shows that family caregivers who have a chance to talk to their loved one's doctor about advance care planning feel less guilt after their decisions as caregivers after their loved one dies. But many of us don't even know if our insurance covers end-of-life discussions. And doctors often do not initiate these conversations. It's usually up to us as caregivers to ask if such disucssions are covered and to schedule them. 

    Unbelievably, Medicare does not currently reimburse doctors for these kinds of discussions, which partly explains why many doctors do not take the time to talk to family caregivers about advance care planning. Such coverage was dropped from the Affordable Care Act five years ago because of an unfounded fear of "death panels." There is hope, however; the Centers for Medicare and Medicaid Services is expected to make a decision by November about whether or not to reimburse doctors for end-of-life discussions. 

    In my post this week for I describe 

    • what end-of-life discussions may include;
    • some info about MOLST/POLST forms and how they can help with advance care planning;
    • where we stand as a nation with insurance coverage for advance care planning; and  
    • how you can support pending legislation in the House of Representatives that would mandate such coverage by Medicare and Medicaid.

    I also share my own discussion with my mother's doctor about her end-of-life care.

    Read "Are End-of-Life Discussions Covered by Your Medical Insurance?" here.