November’s Workshop: Serving our LGBTQ Elders

Participants at the November’s IPDCC workshop were treated to an excellent discussion of LGBTQ issues in long term care.  Most of the morning was dedicated to cultural competency training.  Lane Bannister of the Eskenazi Transgender Health and Wellness Program, and Rebecca Critser, Indiana Legal Services attorney in the LGBT Law Project, helped us understand the wide variety of gender issues that may come up in long term care.  We learned how a community could become more welcoming by reviewing policies and training staff how to respect every person’s choices and preferences.

NOV IPDCC

Their presentation was followed by Brenda Buroker and Jan Kulik from the Indiana State Department of Health Long Term Care Division explaining how several of the federal regulations support learning about and accommodating a resident’s individual preferences, preventing staff to resident and resident to resident abuse, and requiring facilities to properly train staff to meet the individual needs of each resident in their care.

Finally, Donata Barnes and Nicholas Pennington from CICOA offered a list of local and national resources that communities could use to obtain more information and training opportunities.

Feedback from participants showed that this is an important topic that has not received enough attention in long term care.  They were grateful for the opportunity and suggested that this kind of training be offered on a regular basis.  Look for this to be addressed in future workshops.

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August’s Workshop – Serious Mental Illness

Serious Mental Illness (SMI) was the topic of the latest Indiana Person Directed Care Coalition workshop where over 30 participants heard presentations and discussed the impact of residents with this diagnosis in long term care.

Melanie Perry of American Senior Communities and Crystal Livengood of PACE (Program of All-inclusive Care for the Elderly) talked about the current state of care in Indiana and highlighting the growing need for services.  Statistics show that there are twice as many persons diagnosed with SMI than with Alzheimer’s and usually experience an increased incidence of chronic diseases, lower use of medical services and less adherence to treatment recommendations.  Psychiatric hospitals and community mental health centers don’t have the capacity to meet the need.  Long term care facilities will be admitting these residents so will need to develop policies and improve staff training to more effectively and safely serve them.

Stacey Wilson of Greenhouse Mental Health Care offered practical suggestions for caring for persons with mental illness in long term care.  It begins with learning as much about the individual’s social and medical history as possible, using the family and other medical providers as needed.  Staff will have to be trained how each person should be approached, what interventions are effective and when to ask for assistance from others with more expertise.

Brenda Buroker and Jan Kulik of the Indiana State Department of Health highlighted the federal regulations that support individualized care, assessment prior to admission, care planning that includes specialized mental health issues, staff competencies to properly care for each resident, and the complexities of respecting resident rights while trying to implement effective interventions.

Community resources were identified by Donata Barnes of CICOA.  These include the National Alliance on Mental Illness (NAMI), Mental Health America (MHA) and others included in a comprehensive guide compiled by CICOA.

Join us for the next workshop on November 16 at the IndyStar offices at Circle Center Mall.  Register here: https://ipdccnovember2018.eventbrite.com

April’s Coalition Meeting Summary

A good group of 25 culture change participants attended the latest IPDCC quarterly meeting on Friday, April 27.  Amy Magan shared information with us on the new online UIndy MS degree in Healthcare Management. You can find more information here: http://www.uindy.edu/health-sciences/master-of-science-in-healthcare-management/

We were inspired by two presentations related to Expressive Arts.  Dr. Tim Brimmer of Butler University presented their Music First research project in which long term care residents with dementia regularly listen to music they like and then measure its effect on sundowning, medication use, falls, behavior, hospitalizations and caregiver stress.

A playlist of familiar music is developed for each resident based on resident and family interviews as well as the resident’s own responses when played.  Music impacts the parts of the brain that remain intact the longest and can stimulate memories that may not be accessible otherwise.  He illustrated this with inspiring stories of residents who came alive while listening to music and whose quality of life showed real improvement.  Long term care facilities can contact Dr. Brimmer, tbrimmer@butler.edu, if interested in adding this program to their community life.

Donata Barnes, Director of CICOA Health Care Collaborations, led another Expressive Arts session focused on writing and drama.  Attendees had the opportunity to experience examples of activities used in long term care communities that encourage residents to express themselves through writing, drama, music and other art.  As caregivers learn to know each resident’s preferences and best forms of participation, this information can be as valuable as medical information in developing personalized care plans.

Watch for announcements about the next quarterly meeting in July!

Person-Centeredness: What Is It?

We hear much these days about the concept of Person-Centeredness, Resident-Oriented Care, or Person-Centered Care. There seems to be some confusion regarding this meaning, but if we distill it down to its most basic definition, it can be summed up as: knowing the person from a holistic perspective and providing them with a life that is individualized to meet his/her needs and preferences. Additionally, we understand that a “Use it or Lose it” philosophy is an important part of Person Centeredness, knowing that unless we encourage an individual to be as independent as possible, he/she may lose those abilities much faster than any disease progression would dictate.

In our discussion of Person Centeredness, it may help if we return to the philosophy’s roots. Person Centered Care originated in England with the efforts of social psychologist, Tom Kitwood, in 1997 with his book Dementia Reconsidered: The Person Comes First. This book was an effort to improve the care of those living with Alzheimer’s and related forms of dementia, who at the time were still being subjected to medical model care philosophies which often tried to force the individual to meet the expectations of the institutions in which they were living.  Several concepts blossomed from this work, including seeing behaviors as a form of communication for those living with dementia; seeing the individual as a whole person, rather than just focusing on their challenges; and promoting quality of life by nurturing a wide array of human needs.

Since the original concepts of Kitwood were expressed, the notion of Person Centeredness has continued to advance throughout, and beyond, the world of dementia care and now includes a host of compassionate, individualized, humanistic principles. Care recommendations such as encouraging those in long term care venues to sleep until they are ready to rise; providing an abundance of meal choices to meet resident preferences; minimizing the medical aspects of care and emulating home settings within long term care venues; and providing individualized life enrichment opportunities that speak to each person’s historical and current interests are but a few examples of Person Centered practices occurring in a wide variety of care settings.

When examining how care is offered to those who are living with various diagnoses of dementia or to those who are cognitively intact, whether in a long-term care setting or receiving care in-home, Person Centered Care principles set a clear path for good practices. We must be committed to knowing and honoring the individual, to practicing a wellness-based approach, and to understanding that the person, not the profession, is very reason for our efforts.

Melanie Perry, IPDCC Steering Committee member

October’s Quarterly Meeting

A huge thank you to all that came to our quarterly meeting on October 27th. Roughly twenty attendees networked, engaged, and learned!

Ellen Burton from UIndy’s Center for Aging & Community shared phenomenal outcomes from the first phase of the State CMP funded regional nursing home collaborative. Do you know that some participating nursing homes reduced UTIs by over 50%?!

Jalysa King with IU Center for Aging Research (IU CAR) & Regenstrief Institute shared an overview of the Center and offered ways for the community to get involved. Do you know that IU CAR is looking for advisory board members?

Alexandria Wise, an Occupational Therapy doctoral student, presented information on caregiving & the occupation of aging. She asked, “Are we living longer or dying slower?”

Jan Kulik from the Indiana State Department of Health shared new person directed care related nursing home regulations & a new survey process. Are you prepared to implement new processes to support the new regulations?

It was an amazing meeting. We are already gearing up for our next meeting in January 2018. If you have topics that you are interested in having on the agenda – please let us (seffler@iupui.edu) know!

Resident Rights

The concept of culture change has been in the works for a long time.  Thirty years ago, the Nursing Home Reform Law was passed.  It requires nursing homes to “care for its residents in such a manner and in such an environment as will promote maintenance or enhancement of the quality of life of each resident.”  There is a strong emphasis on individualized care with a goal to “attain or maintain the highest practicable physical, mental and psycho-social well-being of each resident.”  A key provision of the law guarantees a long list of Resident Rights that promote dignity, choice and self-determination, including the right to information, to express grievances, to participate in one’s own care planning and to make independent choices.  A complete listing of these rights is available from The National Consumer Voice for Quality Long Term Care website at theconsumervoice.org.

Culture change is a way to create the environment and relationships that make person directed care possible.  The Pioneer Network has on its website a list of questions to ask when assessing a facility’s commitment to person-directed care.  While they are specifically directed at nursing homes, the concepts can easily apply to the wide variety of services available to Elders.  The questions include handling individual choices such as wake up time, bathing, diet and activities.  They also probe for organizational commitments to resident, family and staff participation in creating community and decision-making.  While these are very helpful for consumers to make choices about care, they can also be a tool for care providers to use in evaluating their own culture change journey.

Author: Ron Flickinger, Ombudsman & IPDCC Steering Committee member