Person-first: I'll Be Me & I'm Still Here

A person living with Alzheimer’s Disease (AD) and related dementias is first a person, and only then someone with a disease.  There is no known prevention or cure for AD, but there are treatment options for cognitive and behavioral symptoms.  Social relationships and supports can be seen as forms of non-drug treatment.

Because relationships are built on trust, it is disturbing to hear and read advice to engage in therapeutic lying as a way to connect with persons with dementia.  In “Ten real-life strategies for dementia caregiving,” Family Caregiver Alliance offers tip #4: 

“Therapeutic Lying Reduces Stress. We tend to be meticulously honest with people. However, when someone has dementia, honesty can lead to distress both for us and the one we are caring for. Does it really matter that your loved one thinks she is the volunteer at the day care center? Is it okay to tell your loved one that the two of you are going out to lunch and then “coincidentally” stop by the doctor’s office on the way home to pick something up as a way to get her to the doctor?"

In “A Dark Side of Dementia Care,” geriatric psychiatrists James Ellison and David Hsu explain:

“Therapeutic lies, or fiblets, are often used to reduce stress and manage the anxieties and disruptive behaviors of demented inpatients, long-term–care residents, or the elderly who are cared for at home, who are not reassured by simple distraction or redirection . . . Lies that reduce suffering and stress in patients unable to fully appreciate the cause of distress can be beneficial. Clinicians sanction their use in dementia care and see them as a manifestation of the ethical imperatives of beneficence and non-malfeasance.”

Amy Tan called her mother’s dementia “a truth serum,” which enabled getting to know her mother on an emotional level (“Even when you're losing your memory and you're old, you go back to that childhood part of you and those memories, those emotions and what made you are still there") and served as inspiration for her fourth novel, The Bonesetter’s Daughter (2001).  However, she told The Guardian about moving her mother into an assisted-care residence through subterfuge:  "We told her it cost $750 a month - her social security - and she thought it was a bargain. In all the places she's lived, she was the happiest there. She felt safe. When she was dying those last three weeks, we all moved in, 18 or 20 of us, playing card games and mahjong, eating takeout food, taking turns to stay overnight." 

  

In September 2014, Mental Health Foundation published a literature review on Dementia—what is truth? Exploring the real experience of people living with more severe dementia.  This study found that while lying to a person living with dementia is considered unethical and damaging to the person’s right to autonomy, the practice of lying is pervasive and sometimes considered justifiable in dementia care.  It also noted alternatives to therapeutic lying to persons with dementia include holistic approaches like Validation therapy, Habilitation therapy and Functional analysis of needs.   

In The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer’s and Other Dementias (3rd edition, 2012), Naomi Feil, MSW, focuses on empathetic listening, rephrasing, mirroring, meeting people where they are (including their view of reality), being aware of their emotional and psychological needs.  Validation theory is based on the idea that very old people, who have ignored developmental life tasks in earlier stages in their life, enter a period in which they feel a need to resolve unfinished life tasks (e.g., Erikson’s ego integrity versus despair, Maslow’s self-actualization) before they die in peace.  Neurofibrillary tangles and senile plaques are found in brains of all people with AD, as well as people who do not exhibit any signs of dementia or disorientation.  Feil has observed that many people over age 80 survive damage to brain cells and remain orientated, so they do not need Validation because they validate themselves.  Disorientation in very old people may represent their struggle to restore the past to heal old wounds, though they have lost memory and present-day factual thinking; and despite disorientation, people retain universal human need to belong, to find identity and to express themselves.  Validation allows people to be who they are. 

Feil does not endorse patronizing with therapeutic lies (pretend to believe what disoriented persons says is true) to placate a person with dementia.  Instead, she advocates the real work of exploring the depth of an older person’s personal reality, as there are many levels of consciousness, by asking open questions (starting with who, what, when, where, how) to stimulate conversation without judgment (avoid asking why, which is a request for explanation for our benefit, and does not help person express self).  Feil insists that validation practitioners always tell the truth and are honest because very old people, no matter how disoriented, know what is truth, who is honest and who is lying; if you lie, an old person may quiet down but not trust you.

This month I attended a free documentary screening of Glen Campbell: I’ll Be Me, hosted by Elder Care Alliance, a non-profit organization of senior living and dementia care programs in the San Francisco Bay Area.  The heartwarming documentary opens with Glen and his fourth wife Kim watching home movies: Glen doesn’t recognize his younger self and former wives from his previous three starter marriages, so Kim lets him know "who's that" and Glen exclaims, “I’ll be me!”  

In 2011, Glen went public with his AD diagnosis to raise awareness and then launched an impressive 151-stop Goodbye Tour with his family (two sons and daughter played in band) over an 18-month period that ended in Napa two years ago.  It was inspiring to see Glen continuing to do what he loves—being present to play guitar and sing (with teleprompter help)—while being supported by family, friends, fans, and his faith.  His Elvis impersonation is hilarious! Glen’s neurologist thought engaging in music (his first language) helped retain his cognitive function.

Though I hadn’t heard Glen Campbell’s music for some time, I could recall Jimmy Webb’s catchy lyrics in Wichita Lineman (“And I need you more than want you, and I want you for all time”) and Galveston (“I am so afraid of dying before I dry the tears she's crying”). 

After the Goodbye Tour ends, Glen’s daughter Ashley testified before Senate hearing about the devastating impact of Glen’s AD on family and need to end AD.  This candid documentary also showed his off-stage behaviors: licking his plate, angrily accusing his neighbor of stealing his golf clubs, forgetting he received Lifetime Achievement Award at Grammy’s the night before, etc.

Earlier this year, Alzheimer’s Association honored Glen Campbell with its inaugural Glen Campbell Courage Award for going public and advocating to find a cure for AD.  At 78 years of age and at the 6th stage of Alzheimer’s, he moved to a memory care facility. 

  

Elder Care Alliance, which utilizes I’m Still Here: A New Philosophy of Alzheimer’s Care (2009) in its dementia care program, also distributed copies of this book by John Zeisel, who holds a Ph.D. in sociology and environmental design background.  In his first chapter, Embracing Alzheimer’s, Zeisel suggests that treating people with AD "the old way" as people who can live active lives in society was often better, rather than as patients being institutionalized and hidden from society.  To build healthy relationships with those living with AD, one has to connect through those capacities and facilities that don’t diminish with the progression of AD, or at least diminish most gradually (e.g., hardwired skills like facial expressions, responses to touch, singing, landmarks for way-finding).  His message throughout the progress of AD is: “I’m still here, please help me, I love you, and don’t give up.”

Zeisel provides the following five rules of communication:

1. Hear and respond to the other person’s “reality”
2. Be honest: by being yourself, expressing own reality; honesty includes responding with empathy to person’s definition of reality
3. Always address the person directly
4. Don’t test! Give answers (e.g., “I am your daughter”) rather than ask questions (e.g., “remember me?”) to make person feel competent and in control
5. Don’t say “don’t”: divert and redirect instead—kinder and more effective to change the subject (divert from inappropriate action) so that the person focuses on something else, and then suggest another, safer alternative (redirect)

Next, Zeisel provides seven rules of relationship building to understand and embrace the other person for who they are by changing your own behavior:

1. Don’t be a rock—respond, don’t react
2. Be present!
3. Do as little as possible to help the person be successful—but leave nothing undone
4. Use all the senses: Person with AD gets headache from too many words because brain’s language centers (Wernicke’s and Broca’s areas) aren’t working well.  Instead of words only, use sound, sight, taste, odor and touch to communicate.
5. Find the person’s self-expression and invoke them through shared activities engages that part of a person that relaxes him/her
6. Principle of “I” in the “We”: understand who we are within greater collective whole
7. Follow the flow of the day: providing person a daily flow of things to do that engages mind, body and spirit helps live a more normal life—“the more natural the day, the more the day is treatment for the disease”

Zeisel reminds us that the person living with AD is the same person (before the diagnosis), but just can’t draw on life experiences and express them in the same way so we can take the initiative.  More tips:

• Amygdala emotions: Ask person with AD for expression of emotions (how they feel about topic) versus cognitive data.  
• Memory joggers: In conversation, bring up topics (particular aspects of life of person with AD) to trigger access to memories.
• Be conversation generator yourself: be prepared to talk, even if you have to carry conversation as monologue, because don’t expect person with AD to draw on memory bank of topics and recent experiences to generate conversation.

Accepting and embracing the changes that come with living with AD is a demonstration of unconditional love for personhood.

Imagine 2030: Aging in Hawaii

Hawaii has its own time zone, Hawaiian Standard Time, which lags two and five hours behind Pacific Standard Time (west coast) and Eastern Standard Time (east coast) in the continental U.S.  In my small kid time in Hawaii, this lag made me want to move ahead by joining the brain drain in the mainland. 

Fast forward, decades later after working time-pressured billable hours and traveling around the world’s time zones, I now cherish time to slow down.  Last year, I was amused to learn if you want time to slow down, become a student again because greater cognitive demands of a task slow our perception of time. 

When asked if I would return to live in Hawaii, where my parents are aging in place, my response has been that I’d consider returning to Hawaiian Time for my old age retirement . . . though Hawaii is on U.S. News and World Report’s 10 Worst Places to Retire due to its isolation and high cost of living.  During my visit to Hawaii last month, I reconsidered what it would be like to retire, like a boomerang 20-something, in Hawaii 15 years from now. . . 

I registered for Hawaii Pacific Gerontological Society’s 18^th Biennial Conference, Imagine 2030: Mobilizing our Communities Across Generations, at Waikiki Beach and Resort.  This two-day Conference schedule featured local and national speakers; three concurrent sessions with no more than three choices (not including Falls Prevention Track offered throughout Day 1); roundtable and brainstorming in small groups; all-you-can-eat breakfast and lunch; EnhanceFitness exercise activities; and several breaks for informal networking (including three designated for visiting Exhibitors on Day 2) or beach time J! 

Waikiki Beach time with bronze surfer dude Duke Paoa Kahinu Mokoe Hulikohola Kahanamoku (1890-1968), a high school drop-out (to help support family) and five-time Olympic medalist in swimming.  There is a webcam watching this statue, so visitors can shaka sign (hang loose), as popularized by Uncle Barry J!

Mon. 9/29

7:30am Registration Opens

8:30am Welcome & Opening Remarks

8:45am Keynote Address 

Sacramento-based AARP President Jeannine English delivered the Conference keynote address, Age-Friendly Cities: Livable Communities For All Generations.  She noted that urban Honolulu has the highest percentage of population age 85+ and among the highest percentage of population age 65+ in the nation (3.5% and 17.8%, respectively, according to 2010 U.S. Census).  She talked about supporting older adults’ independence, choice and control through initiatives like the Age-Friendly City Partnership with the City and County of Honolulu and AARP, and caregiving assistance. 

English noted that Hawaii has the nation’s worst older pedestrian death rate, and AARP Hawaii was involved in advocating for Complete Streets policies to design streets safer for all users.  In addition, AARP Public Policy Institute has developed a Livability Index incorporating features like transportation, housing and land use.

AARP’s recent Livable Communities Survey in Honolulu, Hawaii of Adults Age 45+ ranked affordable home healthcare as the top concern.  Hawaii has 247,000 unpaid caregivers who provide 162 million hours of care valued at $2 billion a year.  Hawaii’s average caregiver is age 62, female, married with at least a two-year college degree, and juggles work and caregiving.  AARP has done education, research and advocacy around workplace policies like flexible schedules and family leave to enable caregivers to do all jobs; this has resulted in enhanced productivity, lowered absenteeism and increased recruitment.  In Hawaii, the cost of care for a private nursing home room is $135K per year, or greater than the cost of four years at University of Hawaii (tuition & fees, room & board, books/supplies & expenses).  Hawaii also ranks last in number of nursing beds.  Two-thirds of Hawaii residents are not confident paying cost of one year at a nursing home. 

English presented $5,000 check, a donation of her conference speaking fee, payable to Age-Friendly Honolulu, which was accepted by Honolulu Mayor Kirk Caldwell with AARP Hawaii Executive Director Barbara Kim Stanton included in this photo-op.  Nice segue to next speaker.

9:45am Special Guest Speaker

Mayor Caldwell said Hawaii’s one million residents are the healthiest and live longest, but the State is also the most expensive and regulated.  In 2030, Hawaii’s population will be 25% age 65 or older.  At the time of statehood, Hawaii had among the youngest population who have grown to be the oldest in the nation.  Caldwell talked about the need to do better with Age-Friendly initiative, which includes 100 volunteer citizens on its advisory committee; proposed Rail Transit Project (mass transit is about social equality); greater accessibility to health or market needs within one-fourth mile of transit stop; private sector building affordable senior housing; ohana zoning (in-law units); arts and culture corridor; park beautification (more shade); Complete Streets (median strips, parklets, remove car lanes, etc.); and fast track permitting process for retrofitting/remodeling (e.g., ramp for wheelchair). 

10:30am Exercise Activity

Paula Keele of Maui County led EnhanceFitness, an award-winning, evidence-based multi-sensory exercise program that aims to improve cardiovascular fitness, strength, flexibility, balance and cognition--all while having fun! 

Michiyo, Merlita and volunteer in HPGS T-shirt helped register about 300 Conference attendees, mostly locals.

10:45am Break
11:00am Concurrent Session A (45 minutes) 

In The Future of Caregiving: Writing and Poetry to Preserve our Humanity, retired Hawaii teacher Frances Kakugawa read excerpts from her book, Mosaic Moon: Caregiving Through Poetry, about caring for her mother who had Alzheimer’s disease. Through the reflective process of writing that gave meaning, she learned that caregiving teaches humanity and compassion: how to listen and dignify the person.  She cautioned against saying “it’s the disease, not the person,” because this viewpoint “vaporizes” the person; instead, she needed to go beyond the behavior and focus on everything toward her mother’s benefit, which became her own benefit.  She asked, “if today is the last day of life, how can I make it the best?” because the only way caregiving ends is death, so she would not spend unnecessary energy on things she didn’t need to care about like regrets because she did the best she could and then grieving could take its natural course. 

11:45am Break
12:00pm Awards Ceremony & Business Lunch 

All-you-can-eat lunch J

All six 2014 recipients of Na Lima Kokua Ma Waena O Makua (Helping Hands Across the Ages) Awards were women!  It was refreshing to see Mr. James Mariano of Maui County Office on Aging take the stage to accept award on behalf of Research and Teaching Award Recipient Heather Greenwood for introducing Powerful Tools for Caregivers, an evidence-based intergenerational program that assists caregivers in recognizing and mastering self-management skills to become better caretakers of themselves.  Community Service Award Recipient Merlita Compton (middle in photo above) was most lei’d because she’s also member of HPGS Conference Planning Committee. 

Eme Kim and Cullen Hayashida from Kapiolani Community College’s Kupuna Education Center.  Eme also has her own consulting practice, Elder Care Counseling and Education, and Cullen is President of Kupuna Monitoring System.

1:30pm Mini Break

1:40pm Concurrent Session B (75 minutes) 

Building Dementia-Friendly Communities with Jody Mishan (State of Hawaii Executive Office on Aging), Christine Payne (Alzheimer’s Association-Aloha Chapter), Anna Loengard (ClarisHealth Hawaii), Michael Splaine, and Michael Cheang (University of Hawaii).

In Hawaii, an estimated 25,000 adults age 65+ have Alzheimer’s disease, and this figure is projected to increase 40% by 2025.  Jody, Coordinator of Hawaii State Plan on Alzheimer’s Disease and Related Dementias (ADRD), provided these highlights:

• Low-hanging fruit: aloha spirit, strong community, family values, Alzheimer’s Association-Aloha Chapter, Hawaii State Plan on ADRD; nursing home quality improvement; evidence-based caregiver interventions at Honolulu Gerontology & Alzheimer’s Association; evolution of Hawaii’s ADRCs
• Visionaries: Hawaii County Fire Department’s free tracking equipment, Project Lifesaver; Dr. Ritabelle Fernandes of Kokua Kalihi Valley Patient Memory Care; Dr. Kore Liow of Castle Hospital Hawaii Pacific Neuroscience; Kuakini Pacific Islands Geriatric Education Center; Chris Ridley, LCSW, Hawaii County Alzheimer’s Association; Age-Friendly City Honolulu Initiative; Namaste Care at Hale Aina, Hale Kuike, Manoa Cottage Kaimuki – low light, aromatherapy
• Champions: #1 dementia caregivers who provide 70% homecare; in 2013, Hawaii had 64,000 family caregivers delivering 73 million hours of unpaid care valued at $910 million
• Collaboration: Healthy Brain Initiative Road Map 
• Opportunities Hawaii 2025: dementia-friendly communities

2:55pm Mini Break 

3:05pm Concurrent Session C (45 minutes) 

Sustaining Evidence-Based Programs to Serve Current and Future Generations with Hawaii Healthy Aging Partnership-Embedding Evidence-based programs (HAP-EE) members Pauline Fukunaga (Hawaii County Office on Aging), Merlita Compton (Kokua Kalihi Valley), Jo Reyes (Maui County Office on Aging), Caroline Cadirao (Hawaii Executive Office on Aging), Michiyo Tomioka (University of Hawaii).  Photo-op only.  I didn’t attend this session since I heard from Merlita, Jo and Michiyo on this topic at ASA conference six months ago.  Instead, I attended. . .

How to Integrate Tai Chi into your Program or Community with Tai Chi for Health Institute (TCHI) Master Trainer Ileina Ferrier, introduced by Stan Michaels of Hawaii Department of Health’s Injury Prevention & Control, which has partnered with TCHI as part of its fall prevention program.  Two-day Tai Chi for Arthritis & Fall Prevention Instructor Workshop cost is $198.  In addition to arthritis/fall prevention, Ileina explained that tai chi’s slow movement facilitates breathwork to invigorate power of mind.  We began and ended with tai chi salute as a reminder of friendship (four fingers), humility (thumb) and strength (fist).  

3:50pm Mini Break
4:00pm Roundtable Session (30 minutes)

University of Hawaii's Pamela Chow and Seiko Sato facilitated roundtable discussion, Are Hawaii Communities Age-Friendly for Older Adults? Pamela took her sabbatical at Portland State University, which was approached by WHO to collaborate in its Global Age-Friendly Cities Project. 

Pamela then introduced Hawaii Communities For a Lifetime (HI-CFL) project, which involves residents in making a photographic evaluation of their neighborhood based on WHO’s age-friendly framework: physical (housing, outdoor spaces and buildings, transportation), social (social participation, respect and social inclusion, civic engagement and employment), and service (community support and health services, communications and information).  HI-CFL kick-off in Liliha, McCully-Moiliili, and Kaneohe involved residents in MAPPS (Mapping Attributes: Participatory Photographic Surveys) training and discussions, community conversation and a community report.

4:30pm Adjournment

All you-can-eat pupu (appetizers) at Pau Hana (after work) networking event in Pool Terrace 

Jo and Paula join all-you-can-eat to increase energy for Enhance Fitness!

Tue., 9/30

7:30am Registration Opens

8:30am Welcome

HPGS President Shannon Miyazaki and Conference Chair Suzie Schulberg (holding Messaging with Love notecards, with life lessons from local centenarians, made by Iolani School student) welcome us to Day 2.

8:45am Keynote Address

In Lessons in Aging: A Global Perspective, Kate Bunting, CEO of HelpAge International USA, showed catchy 1-minute video, You’re Going to be Old One Day, followed by a call to sign Age Demands Action petition to push for UN convention to protect the rights of older people.

October 1 marks UN International Day of Older Persons (2014 theme, Leaving No One Behind: Promoting a Society for All) when HelpAge released its GlobalAgeWatch Index 2014 ranking 96 countries according to the social and economic well-being of older people (income security, health status, capability and enabling environment): Norway ranked #1, while U.S. ranked #8.  My personal favorite, Singapore, didn’t make the list due to lack of data. 

9:45am Exercise Break 

Paula led 15-minute Enhance Fitness exercise to Rose Royce’s Car Wash and then My Bonnie Lies Over the Ocean.

10:00am Break/Exhibits/Networking

State of Hawaii Executive Office on Aging offered print publications.  According to Aging & Disability Issues 2014: A Guide for Hawaii’s Legislators, Organizations & Citizens, the 9^th annual publication sponsored by HPGS, Hawaii Family Caregiver Coalition (HFCC), Hawaii Disability and Communication Access Board (HCAB) and Maui County Office on Aging, the Aging Network’s priorities include:

• Kupuna Care, a state program for non-Medicaid eligible kupuna to remain in their homes by offering home and community-based services such as adult day care, assisted transportation, attendant care, case management, chore service, home delivered meals, homemaker service and personal care.
• Aging & Disability Resource Centers (ADRC) in each county to provide information, assessments and options counseling for anyone needing long-term support and services
• Long Term Care Insurance public awareness and education campaign to build community support for mandatory social insurance program to help Hawaii residents pay for long-term care

Assistive Technology Resource Center of Hawaii (ATRC), State of Hawaii’s designated Assistive Technology Act agency, links individuals to technology but does not sell any products.

Kokua Mau (Hospice & Palliative Care) Executive Director Jeannette Koijane and former Compassionate Care of California POLST Program Director Leilani Maxera. Hawaii’s POLST form is printed on bright lime-green cardstock. Effective July 1, 2014, Hawaii allows Advanced Practice Registered Nurses (APRN) to sign POLST so the form was renamed Provider's (replacing Physician's) Order for Life Sustaining Treatment.  This change was made to reduce barriers to effectuating such orders, especially in rural areas where primary care providers are APRNs rather than physicians, and in long-term care settings where physician visits may be several weeks apart.

 

Eme at AARP, which scheduled her for two presentations at its Oahu Family Caregiver Conference on Saturday. 

Sage PLUS/SHIP (State Health Insurance assistance Program) Coordinator Pamela Cunningham and volunteers provide free, one-on-one assistance to help Medicare and Medicaid beneficiaries navigate the complexities of health and long-term care systems.  In FY 2014, SHIP was transferred from the Centers for Medicare & Medicaid Services (CMS) to the Administration for Community Living (ACL).  I kept bumping into Pamela after I first met her at CMS National Training in San Francisco in August, and then while in Honolulu last month, I saw her at Senior Fair, HPGS conference and AARP Caregiver conference!  Her SHIP table was always crowded, and Pamela mentioned her office was receiving 100 calls per hour due to non-renewing Medicare plans.

Merlita visits Cullen at Kupuna Education Center, which offers training for Home Care Worker, Family Caregiver, Active Aging (Career Transitions) and Kupuna Connections online TV show.

11:00am Featured Speaker  

In Unleashing the Potential of All Generations in an Age-Intentional World Generations United (GU) Executive Director Donna Butts noted Hawaii’s concept of ohana (family) honors all generations, staying with "what’s true and right."  (On this 20^th anniversary of the UN International Year of the Family, GU published Intergenerational Family Connections: The Relationships that Support a Strong America.)  Save date for GU’s biennial Integenerational Action on a Global Scale Conference: July 21-24, 2015 in Honolulu, Hawaii – first time outside of D.C.!

11:45am Lunch, Network, Exhibits

1:00pm Mini Break

1:15pm Featured Speaker 

Dementia-Friendly Communities by Michael Splaine - Since age is the most significant risk factor for dementia, support for WHO Age-Friendly Cities would have a positive impact on the lives of persons living with dementia.  Splaine added that a Dementia-Friendly Community would include more public awareness about dementia that leads to support for persons with dementia and their caregivers to allow for independent living. 

Splaine presented World Alzheimer’s Month 2014 Theme, Dementia: Can we reduce the risk? (1-look after your heart, 2-be physically active, 3-follow healthy diet, 4-challenge brain, 5-enjoy social activity) T-shirts to Shannon and Suzie.

2:00pm Break/Exhibits

Adele Ching, Senior Medicare Patrol Coordinator at State Executive Office on Aging.

2:30pm Imagine 2030 Brainstorming Session

Groups addressed best case scenario, supporting and restraining forces for ten topics: advocacy & policy, business innovation, caregiving, economic security, elder-friendly community, fall prevention, healthy aging, intergenerational exchange, workforce development, and volunteerism.

4:00pm Closing Remarks

“Fun” in Hawaii’s Aging Community

When one conference attendee learned that I was visiting from the mainland, she asked me, “What are you doing for fun (outside of the conference)?” As a Tiger Mum’s daughter and gerontology geek, I told her how much I enjoyed reading Honolulu Star-Advertiser’s daily local coverage of aging issues:

• 9/27 By adjusting your lifestyle, you, too, might reach 100: HMSA’s Blue Zones Project Hawaii initiative is consistent with practice of ancient Hawaiian values like kuleana (responsibility/concern) and ohana (family unit) to create conditions for each member of the community to engage in healthy living and enjoy long life

• 9/29 End-of-Life Care: A New Video Campaign Gives Patients a Voice on Treatment Options: Hawaii has nation’s 2^nd highest rate of hospital deaths at 33% v. U.S. 25% (though most patients prefer to die at home), nation’s 45^th lowest use of hospice care (which focuses on making terminally ill people as comfortable as possible, usually at home) at 36% v. U.S. 48%); Advance Care Planning Decisions videos are not available for individual viewing at home because they are intended to be part of a conversation with a health professional, and HMSA is making these videos available in every major hospital and hospice in Hawaii, and working to create local versions featuring Hawaii residents and languages commonly spoken in the islands.
• 10/1 Seniors’ Health Care: ‘Silver Wave’ about to hit shore:  Editorial suggests that State Oversight of Home and Community-Based Services Working Group consider community support for family caregivers at all stages of providing elder care, with easily accessible training programs; private financing for middle-class families who don’t qualify for Medicaid to pay for respite care; educating Hawaii residents about hospice and other end-of-life programs.
• 10/2 Weighty Ambitions: Profile of 65-year-old Pearl City grandfather and weightlifting champion who has battled health issues (stroke, sciatica) yet determined to break records at quadrennial World Master Games in 2017.

My "fun" pre-conference activities included: 

Hawaii Pacific Health’s Women’s Way to Health, a free community health conference at Ala Moana Hotel, included topics that affect older adults like incontinence (experienced by 1 in 4 women, and which women experience twice as often as men), osteoporosis/falls prevention (1 in 3 women over age 50 will experience osteoporotic fractures versus 1 in 5 men), aging brain (women make up two-thirds of Americans living with Alzheimer’s) and diabetes. 

 

Elvis lives in bronze statue outside Blaisdell Center, site of his 1973 Aloha from Hawaii concert and 30^th Anniversary Hawaii Seniors Good Life Expo, a 3-day event with over 300 exhibit booths: mix of government, non-profit and commercial, plus entertainment. 

Merlita told me about American Samoa Territorial Administration on Aging staff's visit to Kokua Kalihi Valley Elderly Program, which serves sizeable Samoan seniors.

 

In Hawaii, estimates project that 1 in 2 will have diabetes by 2050.  American Diabetes Association hosted all-day professional education symposium, Type 2 Diabetes:Easier to Prevent or Control?, but I chose instead to attend AARP Family Caregiving Conference and then family dining out. 

Seniors perform hula 

Diamond Head Mortuary burial plot goes for $9,000; my parents bought theirs for about $1,500 each about 40 years ago.  Based on inflation calculator, $1,500 in 1974 is $7,242 in today’s dollars.   

5^th Annual Rice Festival benefits Lanakila Meals on Wheels, which provides meals to 2,300 kupuna (seniors) and persons with disabilities to support their independent living in the community.  This community event also set a Guinness World Record for the world’s largest loco moco at 1,126 pounds, which took 3-1/2 hours to prepare!  

Serving seniors is a great cause, but I was distracted by potential food safety concerns. . . like 600 pounds of cooked rice, which FDA Model Food Code lists as potentially hazardous food, sitting in open air at room temperature poses risk for foodborne disease as bacteria reproduce every 15 to 30 minutes when maintained at temperature danger zone (40F-140F).  White rice reminds me of local comic Frank DeLima’s advice for all ages: “Slow down. Walk more. Drive less. The less you drive, the more you’ll see.  Above all, eat rice.  If you have diabetes, make that brown rice.” 

Noticed lack of hair restraint during preparation of ground beef patties (200 pounds), scrambled eggs (300; more authentic over-easy eggs with runny yolks would have been cause for salmonella poisoning so FDA advises thorough cooking until both white and yolk are firm), and gravy (200 pounds).  Food prep volunteers said the finished product would be donated to the homeless.  According to the 2014 State of Homelessness in America report, Hawaii has the nation’s highest rate of homelessness (451 per 100,000), and includes a growing number of homeless seniors, so food safety is concern since seniors have a higher risk for contracting foodborne illness because their immune system weakens with age.

Finally, I made "fun" post-conference plans to visit Manoa Cottage (mentioned as one of the visionaries in conference’s Dementia-Friendly session) and Neal Milner (retired University of Hawaii professor with several inspiring encore careers), attend Medicaid Planning for Long-Term Care seminar and AARP Family Caregiver Conference, conduct updated geriatric assessments on my parents and help them research Medicare Advantage plans since their HMSA Akamai Advantage plans were discontinued. 

Manoa Cottage in Kaimuki is a skilled nursing facility known for Namaste Care for persons with advanced dementia.  The Kaimuki site, opened since 2012, looks like other apartment buildings in the neighborhood with a pair of papaya (non-GMO, I hope) trees outside the parking lot.  Tiger Mum came with me for the educational value because it’s good to know what resources are available if you can’t do-it-yourself, especially dementia care (even Glen Campbell’s family support and financial fortune couldn’t keep him at home when his doctor advised his move to a “memory care facility”) but Pop refused to join us on an excursion because he wants only to age in place. . . yet, my paternal grandparents both had dementia so I want to learn more about dementia care, even in an institutionalized setting.

 

Unlike the stereotypical hospital-like nursing home institution with drug-induced residents, Manoa Cottage describes itself as a “small community” that enables its staff to give personalized and holistic care with visits by therapy labradoodle and students enrolled in nearby Iolani High School’s One Mile Project to improve the lives of older adults within a one-mile radius of their school. 

Based on social worker Joyce Simard’s book, The End-of-Life Namaste Care Program for People with Dementia, Namaste Care takes place in a designated room, five hours a day, staffed by certified nursing assistants trained as Namaste Carers who engage residents in “meaningful” activities of daily living (ADL) through sensory-based activity and interaction—using soft colors and homey décor, soft music for motion exercises, lowering/turning up lights and soothing/livelier music to signal mealtimes, lavender or seasonal scent, explaining activities, hugging/touching in greeting and goodbye, etc. 

Director of Social Services Allison Tabarracci provided tour though there is wait-list for beds occupied by 27 residents.  There is a registered nurse on duty 24/7, and I tried to imagine the nurse’s station as a home office.  Daily rate was $341 for private room, so do the math: $124,465 per year.  A shared room with three residents was $300, or $109,500 per year.  Ouch, it's not even certified for Medicare/Medicaid, so it’s mainly private pay, long-term care insurance.   

I attended legal seminar, How to get nursing home costs paid by Medicaid, presented by funemployed estate planning attorney Ethan Okura. Hawaii adopted federal Deficit Reduction Act of 2005 (DRA), so the look-back period for non-exempt asset transfers prior to Medicaid application is 60 months, and the penalty is based on $8,850 average monthly nursing home cost.  (In contrast, slowpoke California has not yet implemented full regs for DRA so its Medi-Cal look-back period is 30 months, and the penalty based on $7,628 average private pay rate.)

On Saturday morning, my sister and I joined about 450 persons for AARP Oahu Caregiver Conference, which included Resource Fair and scones.  AARP Hawaii Conference Chair Laurie Kaneshiro drafted her husband Eugene to participate in Caregivers R Us panel.  Eugene talked about his wife giving up her job to care for her mom who had Parkinson’s and moved into their home, and his weekend care of his blind father with colon cancer.  He provided advice like communicate (be aware of emotional meaning of words because “women have great memories,” talk about finances to pay for care); learn to laugh, deal with mess and let it go; time to care for oneself like eat regularly, whatever gives relief or refreshes; and don’t expect perfection when providing care; feelings waver but continue to give because actions are expressions of love.

Another caregiver Russell Nanod returned home to become caregiver to his mom during her three-year battle against ovarian cancer and legally blind father with multiple chronic conditions; since caregiving can be stressful, he made sure to play golf with friends on weekends and had a 5 handicap after his mother died.  Mediator Tracey Wiltgen moved in with her mom, diagnosed with Alzheimer’s and cared for 12 years, but risked isolation and her own health trying to do it alone so she reached out to hire caregivers and finally moved her mom to skilled nursing facility in last nine months of life.

Three points to remember:

1. You are not alone
2. Take care of yourself
3. You are essential

Annual cost of paid care in Hawaii

• Adult Day Health Care                    $19,175
• Home Health Aide                          $57,772
• Assisted Living Facility                    $57,000
• Nursing Home (semi-private)          $121,545
• Nursing Home (private)                  $135,050

In Improving Quality of Life for Caregivers, Michael Cheang offered these tips: 

• Don’t do caregiving alone (not martyr)
• Be self-ful, or between self-less (burnout quickly) and self-ish (too busy with own situation to help)
• Be proactive (make things happen for you) versus reactive (let things happen to you)
• Have boundaries and care partner involving family, friends, neighbors, paid help to give others opportunity to show they care
• Decide with people, not for them
• Take advantage of community resources

Eme moderated Services and Transportation to Help with Living at Home panel with Debbie of Gerontology Program at Child & Family Services, Roger at Catholic Charities and Cindy at Project Dana.  In a later session, Eme facilitated a caregiver support group.

Chris Ridley, LCSW of Hawaii County Alzheimer's Association (mentioned as one of Dementia-Friendly visionaries at HPGS conference), presented Minimizing Challenging Behaviors in Dementia.  She reminded us that a person with dementia gradually loses memory, but their personhood does not disappear, so caregivers need to know the person with dementia, their history, culture, values, favorites, etc.  Caregiver also needs to give person with dementia a sense of control like offering choices (e.g., ask coffee or tea? cream or sugar?). 

Caregivers must take a proactive stance to provide an environment that accommodates for the person’s fluctuating levels of functioning.  In response to an episode of agitation or anxiety, utilize four-step approach:

1. Validate in action and words: accept their world
2. Assess for basic needs: hunger, thirst, toileting, activity, touch, comfort
3. Provide for basic needs
4. Distract to activity

Afterwards, reassess potential causes of behavior related to:

• Physical and emotional health: acute/chronic illness, dehydration, medications, constipation, depression, fatigue, etc.
• Environment: clutter, excessive stimulation, not enough cues, unfamiliar or unstructured environment, lack of meaningful activity, etc.
• Tasks:  too complicated, unfamiliar, etc.
• Communication: misunderstand what is being said, inability to find right words, etc.

With dementia, Chris said we need to shift gradually from curative, medical model to palliative, psychosocial model so focus on quality of life and comfort—things that matter and can control.

While riding TheBus, it was “fun” to see age-friendly banner ads on Fall Prevention Tips for Seniors and Rewarding Home Caregiver job growth expected to increase 70% by 2020 (but no mention about salary, working conditions, turnover, etc.)!  Oahu’s TheBus Senior Annual Pass is $30  -- a real bargain compared to San Francisco’s Muni Senior Monthly Pass is $23, and seniors can get kicked off Muni bus if they’re caught without ID to prove their age.

As much as I wanted to runaway from Hawaii, I still return to people who know me from my small kid time.  My experience in American Samoa earlier this year instilled a renewed appreciation for values like family interdependence.  In Asian American and Pacific Islander (AAPI) culture, using extended family members as unpaid or underpaid domestic workers is common, and there is more reluctance to institutionalize elderly relatives and to seek professional caregiver respite and supportive services.  AAPI cultures endorse the filial piety tradition of caring for elders – perhaps also out of economic necessity because of the high cost of living and contracting out caregiving to third party providers and institutions. 

My grandparents and parents immigrated from Communist China, where they harbored a distrust of government including welfare; family and village were the only acceptable sources of charity. My grandparents were do-it-yourself types who never took advantage of Older Americans Act (OAA) programs.  With my parents, I tried to introduce them to OAA programs (senior center wellness classes, congregate meals) but they told me they have no time because of their work ethic (they remain self-employed running the family business) and discriminating palates. 

If I ever retire in Hawaii, I’d return like a boomerang to live with my parents while paying rent in-kind by working the family business (based more on cheap labor than nepotism).  My parents’ home design is already age-friendly, and it’s also about location, location, location (near Kapiolani Community College, where I can enjoy its Farmers’ Market and enroll in lifelong learning classes; walkability; view of Diamond Head and Pacific Ocean).  If I get tired of urban Honolulu’s traffic and concrete blight, maybe I’ll escape to neighbor isles like Molokai and Lanai (though 97% owner Larry Ellison is turning former Pineapple Island into luxury tourist destination) . . .

 

If I want time to slow down, I’d be a student again so I got together with my all-time favorite professor and Hawaii visitor attraction, Neal Milner.  Though retired as professor of political science, Neal remains storyteller, actor, playwright and author of The Gift of Underpants, but I did not gift underpants to him J.  He and his wife just returned from visiting their Portland-based daughter (who once quit her job to work as temp so she could travel around the world!) and back just in time for Neal to provide TV commentary (keeping candidates accountable) on gubernatorial debate. 

We dined at 220 Grille to support Kapiolani Community College’s Culinary Arts Program, feasting on Hanalei Poi Crusted Island Catch with Kabayaki & Wasabi Butter Sauce served with Zucchini, Corn & Tomatoes -- I ate mine with steamed rice, while Neal ordered his paleo-style with Waipoli Hydroponic Greens instead.  But like My Dinner with Andre—one of my favorite films which is just one scene of two friends catching up over dinner—the delicious meal was incidental to our more meaningful conversation about living a life without regrets, which some people wait until retirement or near death to be honest and seize opportunities.