Place matters

This month’s three-day Legacy Film Festival on Aging (LFFoA) featured “Stay, or Move” program, exploring where we’ll live as we get older and what kind of role place plays in the quality of our lives: staying put in our homes (aging in place) or moving on to communities (aging in community).

Staying inside an air-conditioned theater was respite from the heat wave in San Francisco.  At least three seniors who lived alone at home in San Francisco succumbed to death over Labor Day weekend when temperatures rose to a record-breaking 106 degrees.  San Francisco and the U.S. Senate Special Committee on Aging held hearings on emergency preparedness and the special needs of Older Americans.  

Sunny skies brought smiles to LFFoA Director Sheila Malkind with Mother, Child filmmaker Tin Pang and his mother Kitty, outside New People Cinema.  As volunteer, I had awesome opportunities to meet and greet filmmakers and audience members when they arrived to the theater. Tin and Kitty had friends and family from Australia, Toronto and Brisbane (California) attending LFFoA.                            

Stay, or Move 

Bay Area filmmaker Kristi Denton Cohen answered questions about Stay or Move from Arlene Reiff, LFFoA Board member and Transition Network’s San Francisco Bay Area chapter co-founder.  Some films (like Stay or Move) shown at LFFoA are freely available online, but it still pays to attend LFFoA, which facilitates community dialogue with filmmakers about important issues like housing, transportation, long-term care, etc.  

Kristi and Arlene took questions from the audience. An award-winning filmmaker with over 25 years of experience, Kristi explained that she had no children and decided to make a series of short documentary films exploring housing options as we get older because she wanted to make the decision for herself before someone else did. 

LFFoA showed the following short films from Stay or Move:

·      Deciding to Stay or Move: UC Berkeley Social Work Professor Andrew Scharlach discussed warning signs when it may be time to move (fall risk, can’t get out to places where they want to go, no longer connected to community) and advised finding an “environment that you’d like to live in where people will be part of your life forever – any age, so you’re not alone in the world, people really know who you are.”

·      Staying Put:  building an Accessory Dwelling Unit (ADU) for Multigenerational Living and accessing supports from Marin Villages of the Village Movement 

·      Moving On: affordable housing with onsite resident services coordinator at Strawberry Creek Lodge in Berkeley.

Dial-A-Ride 

Dial-A-Ride (2016) was a short documentary featuring the bonding of passengers on board a UK community bus that provided weekly door-to-door transport for isolated older people living in remote and rural South Wales with no public transport nearby. The pleasant driver provided commentary, noting his interactions with passengers always provided "something interesting or a surprise."  The film’s website provided this Director’s statement:

“With government funding for a community transport cut by half in 2016, it is a tragedy that invaluable services like Brecon Dial-A-Ride are being shut down around the country.  These buses are a lifeline for many older people in the UK, particularly in remote areas where they can’t necessarily get to a bus stop or afford a taxi.  In the UK, 49% of people over 75 live alone, and over two million people are ‘persistently lonely.’  Without a means of transport, many of these older people feel trapped in their own homes.”

The Green House Project

Stay, or Move’s website includes a three-minute video, Celebrating 10 Years of the Green House Project, as a nursing home alternative under Moving On.  At LFFoA, Sheila decided to screen the 25-minute documentary The Green House Project (2004), showing the development of the first Green House in Tupelo, Mississippi. A Green House is home for a dozen residents with private rooms, a central gathering place, open kitchen, table for communal dining to promote convivium, easy access to outdoors garden/patio, and staffed by care partners (called shahbaz, Persian for royal falcons).  In 2005, Robert Wood Johnson Foundation granted $10 million to the Green House Project to replicate the model, which provides residents better, safer and more personalized care so they enjoy better outcomes (quality of life, improved health and remain independent longer) than nursing homes.  

LFFoA Board member Paul Kleyman talked about his hero, Dr. Bill Thomas, and the Pioneer Network leading culture change to revolutionize long-term care institutionalization and replace nursing homes.  He also spoke about home and community based services, like PACE (Program of All-Inclusive Care for Elderly) through IOA and On Lok Lifeways, as alternatives to nursing homes.

Last year, Dr. Thomas told The Washington Post: “We need to get people out of hospitals, we need to create a rich set of community-based alternatives… [the goal is] normalizing the entire lifespan instead of separating and stigmatizing one part as something different.”  In moving beyond nursing homes by setting up Green Houses, Dr. Thomas noted an advantage of their small size:  “Within six weeks, they had to send a truck around to pick up all the wheelchairs …You know why most people [in nursing homes] use wheelchairs? Because the buildings are so damn big…The buildings disable elders.”

In an interview with filmmaker Dale Bell (of And Thou Shalt Honor, a 2002 PBS caregiving outreach project ), Dr. Thomas discussed his Green House Project model, based on principles of The Eden Alternative:

“The nursing home takes good, good, loving, caring people and plugs them into an institutional factory-like arrangement. And it's no good… the best alternative I can think of is a garden…a place that's worthy of our elders, we make a place that enriches all of our lives, caregiver, family member and elder alike… we call it the Eden Alternative.”

Green Care Farms offers a nursing home alternative closer to a garden (as described in blog post coverage of IAGG World Congress).  More recently, Dr. Thomas introduced Minka, an affordable age-friendly, small-scale dwelling. 

Mother, Child 

Sheila facilitated Q&A with Mother, Child (2017) filmmaker Tin Pang and his mother Kitty. Mother, Child is a short film based on Tin’s own experience as carer for his mother after she suffered a stroke in 2015, just 10 days after her retirement at age 65, and then she endured a long rehabilitation to relearn how to talk and walk. Only child Tin dropped everything in Sydney and rushed to care for his single mother in the Gold Coast.  As portrayed in the film, there is inevitable tension when son, who moved out 10 years earlier, returned home to share a small apartment with his mother who became dependent on him in a role reversal with now 30-something year-old child caring for mother who continued to exert control, like reminding her son how to cook steamed fish. Kitty said the stroke caused disorientation and re-examination of her relationship to her son.  Tin said writing about his experience as carer was cathartic, preferable to talk therapy, and making the film was an opportunity to advocate for better supports for stroke victims and their carers. (One in six people will experience a stroke in their lifetime; a stroke occurs every ten minutes in Australia.) 

Tin told Sheila that he filmed “Mother, Child” in just one take! After meeting Tin and Kitty in-person and then seeing their intro trailer, I actually preferred the charming and dynamic Tin and Kitty over the actors Lawrence Leung and Gabrielle Chan who played son and mother. 

Tin reported that after 8 months in the Gold Coast, he and Kitty moved to a smaller apartment in Sydney. Kitty said she has recovered about 80% since her stroke, and Tin has resumed his film career to great success!  

Should the need arise, I would be like Tin and drop everything to care for my own parents so they can age in place.  In the meantime, I continue exploring options for aging in place and community.  

World Alzheimer’s Month 

September is World Alzheimer’s Month.  According to the Alzheimer’s Association:

·      After age 85, the risk of Alzheimer’s reaches nearly 50 percent 

·      Compared to only 4 percent of the general population, 75 percent of the people with Alzheimer’s will be admitted to a nursing home by age 80. 

As a nursing home alternative for people with severe dementia, Hogeweyk Dementia Village in the Netherlands is designed like a small village with residences (each home houses 6 to 8 people with the same lifestyle), courtyards, a grocery store, restaurants and a movie theater.  Residents can move freely inside the house and outside, though they can’t venture outside of the periphery doors of the village on their own.  All staff members are trained in dementia care.

“The act of engaging in community …about developing a more personable and comprehensive way of treating disease...The countless studies reinforcing how many dementia patients feel lonely or isolated, juxtaposed with Hogewey’s considerable success with these residents, call into question how much of dementia is a result of disease, and how much is a result of how we treat it.– Josh Planos, “The Dutch Village Where Everyone Has Dementia”, The Atlantic (Nov. 14, 2014)  

https://changingaging.org/dementia/re-branding-dementia-advocacy/

In Dementia Beyond Drugs: Changing the Culture of Care (2010), geriatrician G. Allen Power, M.D., proposed doing away with segregation of people with dementia in living areas labeled after a disease (like “dementia care” or “memory care”) to rid the institutional mindset that reduces people to their deficits.  He criticized dementia-specific living environments (specialized physical design, specialized staffing, dementia-specific activity programming, lock-down exit systems, isolation of people with behavioral symptoms, complaints of others who don’t want “those people” in their living areas):

1.     physical design does not look and feel like home:  living in an unfamiliar environment creates unmet needs that trigger behavioral expressions, so it’s best to dismantle the institution (long halls, double rooms, nursing stations, alarms, call bells; lack of relationship, autonomy and meaning) and recreate a comfortable home (Green House Project).

2.      civil rights issue: treating people with disabilities as “separate, but equal, not in our neighborhood” reflects fears and misconceptions about the disease, and sells short the potential for growth and engagement that still exists in people with dementia.

Dr.  Power noted that the Green House Model followed a process similar to that used to deinstitutionalize people with developmental and psychiatric disabilities using group homes. The Green House blends people with and without dementia.  Instead of segregation, Dr. Power noted the advantages of a diverse community such as the creation of a nurturing interdependent community.