In No Pity: People with Disabilities Forging a
New Civil Rights Movement (1993), Joseph P. Shapiro noted that
deinstitutionalization and the community living movement in the 1960s was
driven by the rise of the concept of normalization. This sociological (as opposed to medical)
approach to disability has application to all who wish to age in place by normalizing aging and dying: ask the elderly what
matters in the end. Nothing about us
without us!
“The normalization principle
means making available to all people
with disabilities patterns of life and conditions of everyday
living which are as close as possible to the regular circumstances and ways of
life or society.”
– Bengt Nirje on Normalization, which laid the groundwork for social inclusion and
self-determination for people with disabilities
“Normalization demands …an entire spectrum of community
living arrangements to serve all ages and age appropriate behavior levels, to
address progress, integration and independence appropriate to a person's age
and competencies.” – William G. Bronston, MD, on Concepts and Theory of Normalization
Normalization
means giving people with disabilities (including older adults) the same
opportunities in life that others have.
The person is not the one being forced to be normal, but
the environment is changed to give this person a chance to experience what is considered "normal."
Senior & Disability Action staff presented Disability & Ableism Training, including skit on how to communicate and interact effectively with people with disabilities.
Nourishing the whole person
Normally
eating can be a pleasurable activity, but can be challenging to those with
dental problems (missing teeth, adjusting to dentures) or medical conditions (dry
mouth, fatigue). In my work with
seniors, I routinely assess for nutritional risk asking, “Do you have tooth or mouth problems that make it hard for you to eat
or chew?” When a client responds in the affirmative, my follow-up question is,
“Would you like to change to a mechanical
soft diet?” Initially clients resist
saying that they “don’t want any pureed baby food.” Then I explain a mechanical soft diet
includes a spectrum of different textures and consistencies (soft, liquid,
blended, chopped, ground or minced) so it’s easier to chew and swallow. The following are sample foods prepared by
Meals On Wheels of San Francisco—so you see, these meals are age-appropriate
for senior clients!
Mechanical
soft pork loin in sesame with peas & curried lentils: looks similar to kitfo (Ethiopian minced meat) or moo-shu (Chinese ground pork) moistened
with sauce/gravy!
Salisbury
steak in mushroom sauce with broccoli, cauliflower & carrots
Dementia = Being present (tense)
Instead
of the scientific view of dementia with its emphasis on cure, Nader talked
about adopting an attitudinal shift towards a humanistic view of forgetfulness with an emphasis on care.
He noted that forgetfulness has a purpose to “let the mind go” of
memories causing pain or embarrassment, to slowly work one’s way through
death. “If we view elders as our teachers,
then forgetfulness as our teachers” that push us to learn wisdom and qualities
like being present.
Contemporary
Jewish Museum’s Access Program hosted The
Power of Art and Music: In the Lives of Those Living with Alzheimer’s seminar
exploring research on creativity and the brain, and how arts and
cultural experiences can enrich the lives of people living with Alzheimer’s or
dementia. The panelists included:
- Zachary Miller,
MD Assistant Professor of Neurology, UCSF Memory and
- Lola Fraknoi, founder
of Ruth’s Table and Art Time Programs for a Creative Life - Prompting to Make Art kit to
release creativity in persons with moderate dementia
- Andrea Korsunsky,
Coordinator for Center for Dementia Care, Seniors at Home, a program of Jewish Family and Children’s Services
(JFCS) - Communication Strategies: use
nonverbal body language to listen & be present, avoid word “remember”,
ask for help & support in community
- Rachel Main, Family Support Coordinator, Ray Dolby Brain Health Center, Alzheimer’s Association – Why is Music and Art Important in Daily Life for People with Dementia? Engage both sides of brain to reduce 4 A’s (agitation, anxiety, apathy, aggression) & replace antipsychotics, focus on strengths that remain.
Lola's examples of Prompting
to Make Art: 1st slide (top left) shows beginning sketch of open image as
visual cue for persons with Alzheimer’s to “think outside the box” and continue
the drawing.
Care giving/taking
At Ed Roberts Campus, UC Davis
Alzheimer’s Disease
Center
·
Rita Hargrave, MD, geriatric
psychiatrist at Veterans Administration
·
Yaisa Andrews-Zilling, PhD, who also
presented on Recent Developments in
Alzheimer’s Research: prevent and reduce risk by paying attention to heart
health, exercise (African-Americans at highest risk of ethnic groups due to
higher rates of cardiovascular disease, obesity & diabetes), brain
stimulation/education/novelty, nutrition, social and emotional well-being
·
LoWanda Moore, MSW, who also presented
on Taking Care of the Caregiver,
demonstrated relaxation techniques like deep breathing and guided imagery
Elena Portacolone,
PhD, of UCSF Institute for Health & Aging, is recruiting older adults age 65+ who are living alone with either Alzheimer’s disease or mild cognitive impairment for a research project,
supported by National Institute on Aging and Alzheimer’s Association (which
offers Dementia Capable Services & Supports,
a free program to assist people living alone with
dementia in San Mateo).
Alzheimer’s Association Community
Outreach Specialist Debbie Williams quit her job (supported by husband Lenny of Tower of Power) to
care for her mother who was diagnosed with Alzheimer’s. Though anyone with a brain is at risk, she
emphasized that African-Americans are typically diagnosed in later stages of
disease when they are more cognitively and physically impaired, needing more
medical care yet less opportunity for input in long-term care and financial
plans.
Treating Sickness & Death = Palliative & Hospice Care
Nearly half of
all people with Alzheimer’s and other dementias are in hospice care at the time
of their death, yet fewer than half of surveyed nursing homes have some sort of
palliative care program. Palliative
Care and Hospice Education and Training Act (PCHETA) would increase
palliative care and hospice training for health care professionals, launch a
national campaign to inform patients and families about the benefits of
palliative care, and enhance research on improving the delivery of palliative
care.
JFCS Seniors At Home
launched a new Palliative Care Lecture Series, "Let's Keep
Talking About..." Psychotherapist
Sylvia Boorstein and JFCS Director of Palliative Care Program Redwing Keyssar began the
community conversation with “Let's Keep Talking About Old Age, Sickness, and
Death - Liberating the Hard Questions from the Shadows.”
- Old Age: Sylvia embraces old age by disclosing
that she is 80 years old
- Sickness & Death: Sylvia said if one gets cancer, one who
thinks why me? suffers a lot;
but one who thinks why not me?
does not suffer so much. Accept
that death happens so don’t struggle with what can’t change. Redwing expressed her disappointment
reading Dr. Paul Kalanithi’s memoir, When Breath Becomes Air (2016), because the doctor dying of cancer
only mentioned palliative care at the end, no mention of spiritual care but
only medical treatment.
Redwing shared palliative care physician Ira Byock’s The Four Things That Matter Most: A Book About Living (2004) --
“Please forgive me,” “I forgive you,” “Thank
you,” and “I love you” – the
role of forgiveness as an opportunity to let go.
At Books Inc., Pamela Skjolsvik read excerpts from her memoir Death Becomes Us (2015) about overcoming social anxiety disorder and fear of mortality. Her use of humor to normalize death is
similar to mortician Caitlin Doughty, author of Smoke Gets in Your Eyes & Other Lessons from the Crematory
(2014) and founder of Order of the Good Death.
Aging policies
At Home
With Growing Older hosted Brooke Hollister, Assistant Professor of Sociology in
the Institute for Health & Aging at the University
of California , San Francisco
Congress finally passed legislation to
reauthorize Older Americans Act
(OAA), which President Obama signed into law this month—nearly five years after
it expired -- a symbolic act as funding remains flat for OAA programs like Meals On Wheels. For example, government funding provides only 40% of the operating budget for Meals On Wheels of San Francisco (MOWSF), which fundraises the remainder; this month's MOWSF Star Chefs & Vintners Gala raised $3.3 million or 25% of its annual budget. In contrast, Medicare expenditures doubled between 2005 and 2015, suggesting that unmet social needs are "medicalized" and delivered in higher-cost settings.
Booksmith
hosted panel discussion on Marijuana in the Haight: From the 1967 Grateful Dead Bust to Legalization in 2016 with these movers and shakers:
- Andy Clark, Assistant
District Attorney
- Dennis McNally,
The Grateful Dead’s publicist and historian
- Michael Stepanian,
who formed the Haight-Ashbury Legal Organization
(HALO) to defend the Grateful Dead who were busted for marijuana in 1967
- Marsha Rosenbaum, who made
available free copies of Safety
First release by Drug Policy
- Steven Heilig,
San Francisco Medical Society and member of Lt.
Governor Gavin Newsom’s Blue Ribbon Commission on Marijuana
- David Talbot,
founder of Salon and author of Season
of the Witch, a cultural history of
- David Smith founded Haight Ashbury Free Clinic
(HAFC) to care for young drug users and Rock Medicine to provide medical
services at Bill Graham concerts.
Is medical marijuana as effective as opiates in treating pain? Timely topic, especially following 57-year-old artist Prince’s death of possible opioid overdose. In contrast to the epidemic of deaths from opioid overdose, the death rate from marijuana overdose remains zero. And legalization of marijuana could generate tax revenue to fund senior services!
The New York Times' article, “U.S. Suicide Rate Surges to a 30-Year High,” (April 22, 2016) reported
that from 1999 to 2014, suicide rates in the United States
- Men
and women from 45 to 64 had a sharp increase
- Though
suicide rates for older adults fell over the period of the study, men over
75 still have the highest suicide rate of any age group — 38.8 per 100,000 in 2014,
compared with just 4 per 100,000 for their female counterparts.
Does Death With Dignity normalize suicide?
Stefano
Bini, MD, UCSF Professor of Clinical Orthopaedics, highlights “Age is not a
problem” during his presentation on Total Hip and Knee Replacement as a
Treatment for Arthritis and New Developments.
DAAS Benefits & Resources
Hub Grand Opening
San Francisco Department of Aging & Adult Services (DAAS) opened its Benefits and Resources Hub as a one-stop shop for the public to access in-person intake services (Adult Protective Services, In-Home Support Services & Home Care, Nutrition, Case Management, Information & Referral to Community Services), benefits (CalFresh, Medi-Cal), and Veterans Services.
San Francisco Department of Aging & Adult Services (DAAS) opened its Benefits and Resources Hub as a one-stop shop for the public to access in-person intake services (Adult Protective Services, In-Home Support Services & Home Care, Nutrition, Case Management, Information & Referral to Community Services), benefits (CalFresh, Medi-Cal), and Veterans Services.
Entrance to 2 Gough Street
Signs in English, Chinese, Spanish
Check-in with Greeter (gatekeeper) who asks for name & purpose of visit
Service counter
Waiting area
