Unwilling, End-of-Life, Family Caregivers (Research, Video 2:29)

Let’s be honest about end-of-life caregivers. While their contributions can be significant, they don’t always choose to have that role. Some caregivers enjoy nurturing loved ones and find the experience challenging and  rewarding. But few people talk about family caregivers who feel depressed, guilty, trapped in a hole with no way out except the death of persons in their care. 

Maybe unwilling caregivers were the only siblings living near the loved ones, the only relatives or friends with resources to provide care, or the only persons willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of their situations. If they had a choice, would they do it again? Some say they would not.

In a study about family caregivers and unwillingness to serve again, questions were asked about the following:

1)   Whether someone close to them died within past 5 years (25%)

2)   Relationship to the deceased

3)   Provision, intensity, and duration of care

4)   Supportive/palliative care services used

5)   Willingness to care again 

Former caregivers (9%) indicated they would be unwilling to provide care again regardless of time since the death, duration of care, education, and income.

It is interesting to note that older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome. Clearly, caregiving a loved one at the end of life can have negative ramifications that need to be addressed. In this video from the National Hospice and Palliative Care Organization, Anita Brikman explains caregiver stress and how to cope with it.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
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Age Progression Stereotypes of Young Adults (Research, Video 3:38)

Are you locked in the age cage with negative views on aging that you have nurtured since childhood? Do you find yourself making cynical, stereotypical jokes about older adults' undesirable behavior and appearance? Negative self-stereotyping unconsciously influences behaviors. Older adults can help eliminate ageism by committing to unlocking and leaving their own age cages and modeling positive acceptance to younger generations.

Technology can speed up the visual aging process now with age progression simulators that eliminate the long wait to see results of certain aspects of aging. Consider how many young adults today view aging and their responses while being participants in a research study in old-age progression. These college students were randomly assigned to one of three groups: self-aged simulation (viewing their own aging), stranger-aged simulation (viewing strangers aging), or a control group. Which group do you think had the most negative responses regarding aging? If you said the self-aged group that evaluated their own aging progress, you are right.

Individuals in the self-aged simulation group reported greater aging anxiety and greater aging. They also perceived older adults as less competent and expressed more pity and less envy for older adults. Compared to the stranger-aged group, participants who observed their own age progression were more likely to deny the authenticity of their transformed image.

These results confirm the stereotypes many young people have already accepted about older adults, even negatively stereotyping their own aging in virtual experiences. In this video, young people explain their views regarding their own age progression simulations predicting how they would look in 40 years:

You might also be interested in this nationally recognized research our fourth graders did on ageism stereotypes in nursing homes:
https://www.linkedin.com/pulse/intergenerational-service-learning-student-nursing-home-parker/

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

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Robots: Long-Distance Conversations (Alzheimer's Dementia Research, Video 1:26)

The Telenoid R1 is a human-like remote controlled robot created by Hiroshi Ishiguro, a Japanese roboticist. What makes this robot so unique is an audio and transmitter movement through which people can relay messages over long distances. In other words, a loved one in another location can speak to the user of the robot in a conversation. Made of silicone rubber, the robot is designed to be an ambiguous figure in terms of gender and age.

This is what happens when the user communicates with someone who is not present. Cameras and microphones capture the voice and movements of an operator which are projected through the Telenoid R1 to the user. The mouth is able to open and close to imitate talking. A webcam or other video capturing device can record a person's movements and voice and send them to the Telenoid R1 using a connection with Wifi. A few pre-programmed, controllable behaviors are greetings, expressing happiness, and motioning for a hug. Random actions include such behaviors as breathing and blinking, which give the robot the appearance of being alive.

Telenoid R1 was researched at a group home for the elderly with dementia. Researchers compared Telenoid-mediated and face-to-face conditions with three residents with Alzheimer's disease. The results indicate that two of the three residents with moderate Alzheimer’s disease showed a positive reaction to Telenoid. Both residents became less nervous while communicating with Telenoid from the time they were first introduced to it. They also started to use more body gestures in the face-to-face condition and more physical interactions in the Telenoid-mediated condition.

This video, which was recorded at a conference, gives a brief demonstration of how Telenoid R1 communication operates. In addition to usage at work and in education, researchers hope Telenoid R1 can be used successfully with older adults in care homes to communicate with family members who are not able to visit them personally.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
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Unconscious (Implicit) Healthcare Bias: Causes, Solutions (Research, Video 4:33)

Quality of healthcare always depends on the context in which it is given. Context includes all resources available, including attitudes (overt or implicit) of healthcare providers. Healthcare bias toward people of color is experienced widely in America. Sometimes the bias is overt, even intentional. Other times, it is done implicitly, unconsciously, but still doing harm. 

People of color face disparities in access to healthcare, the quality of care received, and health outcomes. Bias in attitudes and behavior of healthcare providers has been identified as a factor that contributes to health disparities. These disparities have been confirmed by considerable research, the Centers for Disease Control, the American Medical Association, and other reputable sources. 

An investigation of the extent to which implicit racial/ethnic bias exists among healthcare professionals was done. Including reviews of 15 studies using mostly American participants, this research examined the relationships between healthcare professionals' implicit attitudes about racial/ethnic groups and healthcare outcomes. These were the results:

1)   Low to moderate levels of implicit racial/ethnic bias were found among healthcare professionals in all but 1 study.

2)   Levels of implicit bias against Black, Hispanic/Latino/Latina, and dark-skinned people were relatively similar across these groups.

3)   Although some associations between implicit bias and healthcare outcomes were not significant, results also showed that implicit bias was significantly related to patient-provider interactions, treatment decisions, treatment adherence, and patient health outcomes.

4)   Implicit attitudes were more often significantly related to patient-provider interactions and health outcomes than treatment processes.

Conclusion of Research:

“Most healthcare providers appear to have implicit bias in terms of positive attitudes toward Whites and negative attitudes toward people of color.” 

Clearly, more interventions targeting implicit attitudes among healthcare professionals are needed. This video titled “How Can Providers Reduce Unconscious Bias?” addresses this issue. David R. Williams, Professor of Public Health at the Harvard T. H. Chan School of Public Health, has been researching health inequities in the United States for two decades. In this video, he sits down with Don Berwick, MD, President Emeritus and Senior Fellow at IHI, to describe three promising strategies to reduce implicit bias.

You can view my post on bias in pain treatment of African American children and adults here.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog

Volunteer Benefits, Testimonies (Research, Video 1:06)

Have you ever considered the many benefits of hospice and other forms of volunteering? There are various reason why people enjoy giving service to others in win-win relationships. Hospice volunteering seems a little weird to some people. The idea of freely spending time with terminally ill patients predicted to die within six months appears somewhat bizarre. I have had people insist that hospice volunteering must be depressing, even after I have said it isn't and have enjoyed it for many years.

How do other hospice volunteers feel about their experiences? A hospice volunteer research survey measured motivations to volunteer, satisfaction with the role and the organization, and fear of death and dying. This is what the survey reported:

1) Motivations to volunteer remained over time, and satisfaction increased with time.

2) Fears of death and dying varied by age, volunteer role, and motivations to volunteer. Fears decreased at six months.

Like many other kinds of service, hospice volunteering shows evidence of being a satisfying experience. In terms of depression about death, it appears to help decrease fears about death and dying.

What about other ways of giving service? Why do people choose them? There are so many choices available. In this brief video, five people who volunteer talk about the volunteer choices they made in sports, in the community, with elderly people, at the Paralympics, in a band, and with animals. Remember, good service is always a win-win opportunity for both the giver and receiver.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Medical Marijuana: Dementia, Alzheimer’s, Parkinson’s (Research, Video 2:33)

Dementia qualifies as a condition for using medical marijuana in American states where medical marijuana is legal. Usage is primarily for agitation of Alzheimer’s disease. A review of legislation and qualified medical marijuana program websites reveals the following:

1)  Of the 24 states and localities where medical marijuana is legal, dementia is a qualifying condition in 10.

2)  In the five states where information was available regarding qualifying conditions for certification, dementia was the indication for  medical marijuana certifications.

Apparently, few applicants for medical marijuana list dementia as the reason for seeking certification.

The following video features the effects of medical marijuana on Larry, a man who suffers with Parkinson’s disease. This is Larry’s first time using medical marijuana. With just a few drops of the cannabis oil under his tongue, several of his symptoms are relieved, including tremors. The results are compelling.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

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Frances Shani Parker’s 10th Blog Birthday Party (Video .50)

Happy Birthday to Hospice and Nursing Homes Blog! Welcome to a cyberspace, blog birthday party hosted by me, Frances Shani Parker. For 10 years, my blog and I have been advocates for person-centered eldercare, hospice-palliative care, excellent nursing homes, and quality in older adults’ lives. There’s an African proverb that says, “If you think you are too small to make a difference, try spending the night in a closed room with a mosquito.” Committed to the belief that a writer and a blog can make positive changes, our goal is to open eyes of hearts and minds with inspirational words that rise from places inside.

The first post of Hospice and Nursing Homes Blog was published on Sunday, January 28, 2007. Titled “State of New Orleans and the Elderly after Hurricane Katrina," it addressed the tragedy that began in August 2005 when broken levees submerged the city in catastrophic floodwaters. Supporting suffering families and rebuilding the city continued to be major problems. Most of the hundreds of people who died as a result of this historical disaster were over 60 years old.

Posts from this blog present universal information enhanced with stories, poems, research, images, and videos. Included are the often-missing voices of people of color and other marginalized populations. Through the years, blog progress has been increased by various revisions and by "village” support. Comments from other healthcare advocates, patients, caregivers, volunteers, policy makers, and the general public are welcome. They add enlightening layers by bringing diverse readers’ views to the discussions.

The vast majority of readers comment through social media discussion groups where we explore our common interests in particular subjects. Topics cover eldercare, hospice, nursing homes, caregiving, dementia, death, bereavement, aging, and older adult life. Sometimes lively exchanges go on for days with most of us not knowing one another, but still sewn together with invisible Internet threads. Comments at this blog site add bonus reader insights that hold hands with immediate blog information.

Occasionally, remarks come in the form of heartwarming compliments. Examples mention, “That’s an intellectual inspiration,” "Thank you for speaking for us,” and one that just appeared this morning from a distressed caregiver stating, “God is using you in mighty ways!” These appreciated word bouquets make my blog blush.

The years keep ending and beginning, and now it's 2017. I can hardly believe my blog is 10 years old. (They grow up so fast!) Thank you for dropping by to celebrate today. Most of all, thank you for all the times you have visited this blog, tasted its life and death spices, and savored its bitter sweetness as we affirm oneness with others, make sense of nonsense, and evolve.

Wow, it's time for the birthday song! Join me in commemorating this milestone with a song sponsored by the American Cancer Society and sung by singer, actress, and spokesperson Jennifer Hudson. After the song, we'll continue to eat, drink, and let the good times roll! As always, I wish you happy endings!

Let's party!

Frances Shani Parker
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Gay Grandfathers, Gay Grandsons (LGBT Research, Video 5:05)

Intergenerational family experiences of the lesbian, gay, bisexual, transgender (LGBT) community are often not represented during family discussions within the larger heterosexual community. These relationships are important in order to understand better how LGBT individuals function within family systems.

This research focused on the experiences of 79 gay grandfathers with their adult children and grandchildren. Like earlier research on heterosexual grandparents, gay grandfathers reported the following:

1)  Close relationships with grandchildren who lived near them and with whom they had frequent contact

2)  Close relationships with grandchildren whom they had informed of their sexual orientation

3)  Social support associated with better mental health

Although there are factors known to affect intergenerational relationships and mental health among older people, the three variables above specific to gay grandfathers are important predictors of the quality of their relationships with their grandchildren and of their mental health.

What about relationships between gay grandsons and heterosexual grandfathers? The following video is a revealing discussion in which a gay grandson starts off interviewing his grandfather. Eventually, the grandson ends up being interviewed and explaining his sexual orientation for the first time to his conservative grandfather.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
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Palliative Care Patient Intimacy (Research, Cancer Video 1:37)

Palliative care is a medical approach for people facing problems associated with life-threatening illnesses. Focused on improving lives of patients and their families, this care prevents and relieves suffering from symptoms and stress of medical conditions. While palliative care and hospice care both provide comfort, palliative care can begin at diagnosis and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when the patient has been medically predicted to have up to six months to live, although some do live longer.

Intimacy, which is often impacted by serious illnesses, should be an important part of a palliative care assessment. Unfortunately, intimacy concerns are rarely assessed for hospital patients receiving palliative care. Why is that? Is it because most patients don’t want to discuss intimacy about their lives? Or is it because most healthcare providers rarely ask about it?

Research on palliative care intimacy was done that provides evidence of the correct answer. Performed at two hospitals, patient screenings included two questions to help identify intimacy issues and palliative care team communication to the referring medical team. These were the results:

1) The vast majority (96%) of patients reported that they had not been asked about intimacy concerns before the palliative care consultation.

2)  A slight majority (56.2%) reported that illness had either significantly or moderately impacted intimacy.

3)  Most (96%) found the intimacy discussion helpful and wanted to discuss these issues with medical providers.

4)  A majority (70.5%) of patients at the end of life indicated their illness significantly or moderately impacted their intimacy.

The need for intimacy discussions between palliative care patients and healthcare providers is important, and patients do want to have them. These discussions should be included as a regular part of routine assessment. 

The Sexuality, Intimacy, and Menopause clinic (SIMS) is one of the first programs in the country to focus on rebuilding the lives of women after they have survived cancer. Many cancer survivors have issues with sexuality. The clinic was started by gynecological oncologist Dr. Elena Ratner and Dr. Mary Jane Minkin, a specialist in menopause, in cooperation with Dr. Dwain Fehon, the chief of psychiatric services at Yale-New Haven Hospital. 

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Aging Taste, Smell Loss (Research, Video 4:16)

How are your sweet and salty taste buds doing? Have you noticed a change in the way they function? Are familiar odors smelling a little funny? While respiratory infections or injuries, and even dental problems might be possible causes, you could be experiencing a loss due to aging. Loss of taste and smell affects many people over the age of 50. This decline is very important. For example, your health could be negatively impacted by causing you to eat fewer foods. What about your eating spoiled food and not knowing it? Even more dangerous would be a gas leak or a fire that you can’t detect.

Taste and smell research with older adults reveals that taste loss does not appear to make elderly people prefer stronger flavors. But nutrition surveys have pointed to a greater consumption of sweet and salty foods. Apparently, real-life eating habits are also influenced by other social and psychological factors. Dietary strategies that can prevent the consequences of unhealthy eating habits by older adults should be examined more.

Loss of taste and smell are closely connected. You might be surprised by how the taste of foods disappears when you pinch your nose closed before you put them into your mouth. Most food flavors come from our ability to smell them, and when we do, something wonderful can happen. Think of the many memories certain tastes and smells bring to mind. Nothing can replace those holiday aromas or pleasing, seductive scents of particular people remembered with affection.

In this CBS video, reporter Seth Doane shares information on the loss of taste and smell and what science is doing about it.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog