Frances Shani Parker, eldercare consultant and Detroit, Michigan author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes, writes this blog. Topics include eldercare, hospice, nursing homes, caregiving, dementia, death, bereavement, and older adults in general. News, practices, research, poems, stories, interviews, and videos are used often. In the top right column, you can search for various topics of interest to you. You can also subscribe to this blog or follow it by email.
An educator who has been actively involved with introducing
children to the nursing home world and dementia for many years, I have always
been impressed with the sensitive ways they embrace knowledge
about this disease. Too often children’s comprehension levels are underestimated
by adults. When explained to them in age-appropriate ways that
support them in their learning, children are generally capable of understanding many important and unusual situations.
Trips with children (elementary-middle) to nursing homesfollowed a great deal of preparation that was integrated into the regular curriculum. This form of teaching-learning is called service-learning. During nursing home visits, I witnessed children's enthusiasm when older adults sang with them, even when a few residents fell asleep or
looked dazed. Although these words were not on the statewide school assessment test,
“dementia” and “diversity” became cool words on our classroom vocabulary list. They further described the human family in which everyone is connected and respected. When I led my class to leave a nursing home one day, a woman reached for my hand and
licked it a few times. It was a child who calmly reassured the class,
“It’s okay. She has dementia.” My pleased mind did an aha dance.
Dementia and Alzheimer’s are topics that many adults avoid. This leaves children at
a serious disadvantage in terms of being informed about them and in seeing
adults modeling positive, proactive, dementia-related behaviors. By engaging
children with information about these topics at school and at home, adults can
impact future generations of healthcare recipients, service providers, and caregivers. Listening
to young people’s concerns and encouraging them to become involved are major
steps toward transformation. Family discussions can be helpful for everyone,
particularly as more family members are becoming caregivers for loved
ones with cognitive decline.
Children have meaningful stories to tell that can help
others understand their candid and sincere perspectives. Meet Dan, a boy who
shares his heartfelt story about his Nan before and after she developed
dementia. He explains his confusion and distress when he didn’t know what was
happening to her. Now, he has learned more about the disease and enjoys
visiting her at the nursing home. Dan has adjusted to his new Nan, one of his
“most important people.” Many say, “It
takes a whole village to raise a child.” But it also takes a whole village to
make a village whole.
Some call it “framing” the
conversation a certain way that heightens the odds of a particular response. No matter what the
procedure is called, end-of-life decisions about treatment options for
critically and terminally ill patients can be influenced greatly by how doctors
present information to patients and caregivers.
In a study about doctors’end-of-life language, a simulation involving an
older adult with end-stage cancer and life-threatening hypoxia (deficiency of oxygen reaching the tissues ) was followed by a debriefing interview. Doctors
participating were hospitalist, emergency medicine, and critical care
physicians from three academic medical centers. Their encounters regarding
presentation of treatment options were observed in real time and analysed.
1)Among 114 physician
subjects, 106 discussed life-sustaining treatment, 86 discussed palliative care,
and 84 discussed both.
2)Doctors framed life-sustaining
care as necessary (53%), while framing palliative care as optional (49%).
3)Among doctors who
framed life-sustaining care as imperative, 16 (30%) felt intubation (insertion
of a tube through mouth and airway to assist with patient’s ventilator
breathing) would be inappropriate in this clinical situation.
The majority of doctors framed end-of-life patient
options by implying
that life-sustaining treatment was the expected or preferred
Framing options in this way can greatly influence treatment decisions
made by patients and caregivers.
The following video is an excerpt of a
televised edition of Frontline. It
features patients, families, and doctors facing complicated end-of-life
decisions at the Mount Sinai Hospital intensive care unit in New York City:
If you have any leakage of urine, you may have what is known
medically as urinary or involuntary incontinence. For many people, this problem
which may cause them to avoid laughing, sneezing, and coughing may have a
profound impact on their quality of life. Over age 50? One out of four women and one out of ten men have this problem. Aging can increase its frequency and
Among nursing home residents,
the frequency is between 43% and 77%. The risk for urinary incontinenceamong
women with cognitive deficits is 1.5 to 3.4-fold higher than for women without
mental disorders. The most common form is stress incontinence(50%), followed by mixed stress-incontinence,
followed by mixed stress-urgeincontinence(40%)
and purely urgeincontinence. The cause remains unclarified in 80% of the
cases. In addition, it is often difficult to treat. Most forms of incontinence
do have psychological consequences such as shame and insecurity due to uncontrolled loss of urine. This can lead
to depression and social isolation.
Contrary to what many believe, incontinence does not have to be a
natural part of aging. This brief televised video of The Doctors explains incontinence and the importance of getting
Discussions of the
LGBT older population and healthcare disparities often conclude with
recommendations for more education of healthcare service providers. But how
successful has that approach been? This research study on LGBT cultural competency training focused on the unique challenges of sexual and gender minorities provides evidence regarding
whether attitudes, beliefs, and intentions of service providers improved.
Included were data collected at four Massachusetts training events piloting a
cultural competency workshop using surveys about lesbian, gay, bisexual, and
transgender (LGBT) aging for mainstream older adult service providers.
Findings revealed significant improvement in
numerous aspects of service providers' knowledge, attitudes, and behavioral
intentions as a result of the training sessions. Benefits included these:
1)Awareness of LGBT resources
3)Spousal benefits for same-sex couples
4)Intention to challenge homophobic remarks
Recommendations included long-term follow-up of participants,
the inception of agency-level surveys to appraise institutional culture change,
and increased curriculum on transgender older adults.
UC Davis Medical Center, formerly
known as Sacramento Medical Center, is a major academic health center located
in Sacramento, California. This video shows strategies used there to improve healthcare
and decrease national LGBT disparities: