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.
Can people accurately predict their own health? Can self-rated predictions of mortality or decline in instrumental daily living activities be mostly true? This study of self-rated health predictions and decline in instrumental activities of daily living included community-dwelling older adults 65 years or older (2,638 males and 3,346 females).
Results reported that poorer self-rated health was significantly associated with decline in both men and women and confirmed that self-rated health is an independent predictor of decline in instrumental activities of daily living among non-disabled community-dwelling older adults.
When the topic of long-term care sexual intimacy regarding people who have dementia arises, family members, loved ones, and staff have varied views. While research is limited on the best ways these residents can express themselves sexually within guidelines respectful of others, this particular study investigated this issue.
Through interviews, this dementia long-term care sexual intimacy research explored the views of relatives and care workers of new relationships or sexual intimacy between care home residents with dementia who were still married to other people. The following themes emerged:
1) The views of care home staff and relatives had similarities in general terms regarding the problems arising around expressions of sexuality in care homes.
2) A light-hearted or non-physical connection between residents is deemed acceptable. The moment it becomes a sexual relationship, decision-making becomes more complicated.
3) Staff were inclined to turn to managers for advice and to consider separating residents. They expressed familiarity with distracting residents from situations that were of concern. 4) Relatives were considerate of the difficulties and dilemmas faced by care home staff. Older adults with dementia can and do express sexual intimacy that is appropriate. Mutual consent is an important factor. However, sometimes sexual behaviors can be inappropriate. Dr. David Conn explains in this video some causes of inappropriate sexual behavior and how these behaviors can be addressed by caregivers and family members:
Older adults have made their voices very clear about wanting
to age in place at home. But without a great deal of support from the community
in addition to varied and better services, aging in place will be hard to meet
mental and physical needs of a rapidly growing population. More emphasis should
be on prevention-focused and community-based approaches.
Fortunately, initiatives such as the World Health Organization's Global Age-Friendly Communities (AFC)
Network, with 287 communities in 33 countries, and AARP's Network of AFCs with
77 communities in the United States have stepped up to meet the challenge. What
should be provided to create successful age-friendly communities? These are necessary considerations:
1)Older adults should be actively involved, valued, and
supported with necessary infrastructure and services.
2)There
should be affordable housing, safe outdoor spaces and
built environments conducive to active living, inexpensive and convenient
transportation options.
3)There
should be opportunities for social participation,
community leadership, and accessible health and wellness services.
4)Active, culture-based approaches, supported and developed
by local communities, and including an intergenerational component are
important.
5)Academic
geriatric psychiatry needs to play a major role in the evolving AFC movement to
ensure that mental healthcare is considered and delivered on par with physical
care.
Age-friendly West Chester, PA, which is featured
in this video, is a great example of a World Health Organization's
Global Network of Age-Friendly Cities and Communities. Older adults there are
socially integrated, diverse, and connected to younger generations.
This is the face of serious pain, a face that many who work in the healthcare fields have seen. I remember describing in a poem a hospice patient of mine in this way: “Eyes that have seen ninety years squint tightly as daggers of pain pierce his cancerous form.” Imagine how family caregivers must feel witnessing their loved ones experiencing intermittent frustration and distress of an internal battlefield of pain.
According to several research studies, pain management was the most identified burden faced by family caregivers in end-of-life caregiving. These fourteen research papers focused on family caregivers' experience of pain management and strategies in end-of-life care. These were the major areas of pain management research focus:
1) Family caregivers' engagement in pain management and communication with the hospice care team about pain control
2) Family caregivers' knowledge, skills, and effectiveness in treating pain
3) Family caregivers' concerns and experience of pain management
Results confirmed what previous studies have already reported with these themes:
1) Inadequate knowledge and assessment skills in pain management
2) Misunderstanding of pain medications
3) Poor communication with the care team
Efforts in understanding and supporting family caregiving pain management needs are areas that must be addressed far better if patient-centered care is to be realized. Implementation is critical to patients’ care and family caregiver empowerment. In addition, more diverse patients and caregivers must be participants in the research. In this video, Dr. Mimi Pattison, Director of Franciscan Hospice, discusses beneficial pain management for those who are dying:
A hospice volunteer many years in Detroit, Michigan nursing homes with residents who had dementia, I was delighted to find
research about volunteers “befriending” people with this disease. This study included a small group of nine volunteers who were younger and older
adults. Responding to interview questions, they shared their friendship experiences
in detail. They emphasized numerous complex and unique
processes that generated issues of power, equality, and boundaries. These are some
of the rewards they received from volunteering. Remember, good volunteering is always win-win:
1)Making friends with people who have
dementia was described as “a deeply personal and human experience, often with
emotional power and profound meaning.”
2)Volunteers were able to see
past dementia stereotypes.
3)Volunteers’ personal
assumptions and boundaries were challenged.
4)Volunteers became more reflective about
love, life, and humanness.
This research concluded that
future studies should consider the experiences of those receiving the volunteer
service, ways of making the mutual friendship more effective, and more
exploration of volunteer difficulties and support.
The recommendation that I
would make to all volunteers and anyone else making friends with people who have dementia is based
on what I have learned while making friends with my hospice patients and others who have dementia. I have included this advice in number
four of my list titled “Hospice Volunteer Success in 10 Steps:”
4) Try other doors.
Patients
will have challenges such as dementia that may not respond to your usual
front-door communication. Try other doors and even windows. Obstacles are
enrichment opportunities in your partnerships with patients. Touch, music,
pictures, stories, and fantasies are a few entry points. Let patients help you
navigate your way into their world.
