Dignity in Elders in Long Term Care: Three Ways to Foster It

Foster dignity to improve quality of life.

Respecting a sense of dignity in elders living in long term care is vital to their quality of life. Dignity is the state or condition of being worthy of honor or respect, both of oneself and others. An organization called the National Consumer Voice designates October as Resident’s Rights Month to focus on and celebrate awareness of dignity, respect, and the rights of each resident. The 1987 Federal Nursing Home Reform Law requires nursing homes to “promote and protect the rights of each resident” and stresses individual dignity and self-determination.

How can we foster dignity in those we serve? I offer three ways to shape our attitudes and actions.

Focus on the Individual. It is looking past the “story” of the disease or condition. A person’s point of view, physical, emotional, or cognitive state changes many times over a lifetime. However, the individual exists through all these changes. Many think of old people as “former people” but each is still who they have always been. Pay attention to the person inside. I’m saddened when a resident’s room has no personal belongings, as opposed to someone whose room is full of things reflecting what’s important to them. Encouraging individual expression in the resident’s living space helps us to relate to them as a person.

Watch Your Language. Words matter and shape our attitudes, beliefs, and even actions. Some words used in long term care are cringe-worthy. At the top of my list is “lockdown” to describe a secure memory care unit or neighborhood.  I’ve heard staff and family members say it. “She needs to be in lockdown.” The definition of lockdown refers to the confinement of prisoners and an emergency measure because of a threat. It’s hardly fitting for people living with cognitive impairment needing a secure, supportive environment! Karen Schoeneman offers suggestions for changing the language of long term care to one that is more respectful.

Convey a Positive Tone of Care. Balancing proficiency in our skills with the human side of care isn’t easy. A study of elders’ perceptions of caring behaviors revealed that technical competency, combined with caring expressions of empathy, most conveyed dignity-conserving caregiving.

With this in mind, I try to act from the belief that our elders deserve to live a life with dignity. Some days, I succeed more than others. What do you think is essential in fostering a sense of dignity in those you serve?

Ann Catlin, OTR, LMT: For twenty years, Ann led in the field of skilled touch in eldercare and hospice. She has nearly forty years’ clinical experience as an occupational and massage therapist. She created Age-u-cate’s Compassionate Touch program and serves as a Master Trainer and training consultant.

 

Certified Nursing Aides in Nursing Homes: The Crisis at Hand

I don’t remember their names or all they did, but I can still see the faces of the certified nursing aides who provided care to my mother when she was in a nursing home. Mostly, the people providing the day-to-day caring for my mother were young, probably in their twenties or thirties, female, and African American. I wish I could state that they all took excellent care of my mom, but there were a few workers who were either cruel or benign in their care. Luckily, my sister and I were able to visit our mom every day and we got to know the certified nursing aides well, intervening as needed.

Overall, the certified nursing aides who provided care during the last years of my mom’s life were a mix of caring, engaging, and personable workers who got to know my mom, my sister and me. One of the women that worked there shared a love of reading with me, and we exchanged books. Another woman was thoughtful enough to bring my sister and me small souvenirs when she came back from vacation. These women knew my mom, could understand her means of communication, and her moods. They also helped to support my sister and me in our caregiving.

Certified nursing aides (CNA) provide the day-to-day basic and much-needed care for people like my mom, but clearly there are not enough people filling this this role. The Bureau of Labor Statistics projects a 9% increase in the need for CNAs from 2018 to 2028, but it is more of an ongoing challenge. An American Society on Aging, article from May/June 2011 issue of Aging Today called it a caregiver crisis. The number of adults aged 65 years and older continues to increase, while there is a lack of enough personnel who are educationally, professionally, and emotionally capable to serve elders. There is a genuine need for more training, recruitment, and intentional planning to fill the much-needed role of caregiving in the long-term care setting. Retention is also a continuing problem. The nature of work to be performed, accompanied by a low rate of pay, makes for providing a continued level of care difficult for both the caregiver and the recipient.

Even though it has been nearly 20 years since my mom was in a nursing home, the demographics of certified nursing aides is similar, as the Paraprofessional Healthcare Institute’s (PHI) report on US nursing assistants employed in nursing homes demonstrates. Unfortunately, it also seems not much has changed in terms of how quickly the role of CNA needs to be filled, and refilled, and the nature of the role does not get any easier.

The Paraprofessional Healthcare Institute (PHI) created a recruitment and retention guide for employers that provides guidance and recommendations, such as providing employment supports, inviting employees to provide input and feedback and other strategies. It will take concerted efforts from those in a position to make changes to support certified nursing assistants in their crucial role in the long-term care setting. We need more caregivers like the ones who connected with my mom, my sister, and me, and feel empowered to provide the best care possible.

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com

 

Person-centered programs

Innovation in long term care communities: early versus late adopters

Innovation in the long-term care setting can take many forms. It can be a novel technology, an inventive volunteer program, or an innovative training class. No matter what the offering is, the willingness to try something new to benefit elders in the long-term care setting is always worth attempting.

In exploring new, innovative projects in the long-term care setting, there can be two types of adopters: early and late. Those communities who are early adopters want to be the first to try something new. They are not afraid of risk or to make mistakes. They will test new approaches and identify ways to refine the process as needed, developing best practices to help build upon lessons learned.

Bringing a new, innovative project into the long-term care setting can also provide a competitive advantage by distinguishing a community as one that offers services that other communities do not. Elders, families, and staff will recognize the community’s commitment to trying new concepts and projects to enhance and improve resident care and quality of life.

The drawbacks in being an early adopter can include the emergence of unknown, unexpected costs to make changes and adaptations to test a new, unknown project. There are also risks involved, especially in the potential unknown effects on residents and staff of a new project. Additionally, the implementation of a new, untested project can affect the workload of employees who are likely already over-burdened while being asked to try a new project.

There are also benefits and drawbacks in being a late adopter. By adopting a project or idea late, the existing kinks likely have been worked out, making it easier to implement and potentially less costly to undertake. The benefits for implementing a project may be well known by the time a late adopter brings it to the community which may make the implementation process more worthwhile. Drawbacks to adopting late include the delay in providing elders with the benefits of an innovative program. Further, there may be more costs to elders that might have been avoided if the program had been attempted.

Despite the benefits and challenges in being an early or late adopter, there are some programs which are beneficial to adopt early. The National Partnership to Improve Dementia Care in Nursing Homes (Partnership) works to improve the quality of care for individuals with dementia who live in nursing homes. Part of the Partnership’s mission includes a focus on addressing the amount of antipsychotic medications individuals with dementia are prescribed. According to a memo from the Centers for Medicare & Medicaid Services’ Center for Clinical Standards and Quality/Quality, Safety & Oversight Group , from 2011 to 2018, there has been a national decrease of nearly 40 percent (38.9) in the number of nursing home residents receiving an antipsychotic medicine; however, more work can be done to reduce the use of antipsychotic medications in nursing homes.

As recently as December 2017, there were 1,500 nursing homes identified by the Partnership as late adopters, which are nursing homes with a sustained high or relatively unchanged rate of antipsychotic medication use, or their antipsychotic medication usage continued to be above average without a high percentage of schizophrenic elders in the nursing home.

In order to address these findings, the Centers for Medicaid and Medicare Services (CMS) is providing technical assistance and support to late adopters. There will be enhanced oversight and enforcement actions to support these nursing homes in addressing their high rate of antipsychotic medication use. These strategies will be useful in helping these nursing  homes implement the changes and strategies needed to address the rate of antipsychotic medication use.  The return on that investment of time and personnel to implement programs like those can be significant, in terms of improving elder care, which is always worth attempting, whether early or late.

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers;  kathy.dreyer@ageucate.com

 

Education First in Dementia Care

Foundational Education is critical for inexperienced caregivers of persons with Dementia. Don’t rely on understanding through experience alone.

Working in senior care for over 30 years, it takes digging deep to recall my early experiences interacting with the elderly and those with dementia.  I was a volunteer and an intern during college when my first encounters occurred.

My experiences were mostly pleasant and fun. The people were just older versions of my grandparents. I enjoyed visiting with the independent seniors. They showed me around their cute apartments and told me stories.  However, encountering people with dementia was another story.

It puzzled me when one lady repeatedly said, “I want to go home,” when she was at home. I didn’t know what to say. One lady forgot that I was picking her up for a concert, even though I reminded her the day before. I thought maybe she didn’t want to go after all.

Little did I know that these people had Alzheimer’s Disease.  Learning that their memory was impaired, I assumed they had NO memory.  Therefore, I thought it was my job to remind them of everything.  I thought their brains could be fixed. I was wrong about a lot of things, albeit well-intentioned.

Learning Through Education and Experience

Over-time, I “got it” and became more comfortable being around people with dementia.  My confidence grew as time went on.  I learned that the things they said and their behaviors didn’t define their personhood. Consequently, I came to enjoy being with them.

Looking back, I can see how extraordinarily helpful training like Dementia Live would have been. I genuinely think it would have propelled my understanding and improved my interactions ten-fold.  Webinars and lectures barely scratch the surface to learn what it takes to promote quality of life for persons with dementia.

Time and experience alone should not be our only path to understanding.  The valuable lessons that the  Dementia Live experience teaches learners include:

  • persons with dementia experience feelings, even with impaired memory
  • their behaviors are a form of communication
  • the environment makes a big difference in their ability to connect
  • purpose in life is still essential for their well-being
  • our communication approaches can make or break an interaction

Learning does comes with time and experience.  However, I submit that ground zero isn’t the best place to start.  People with dementia deserve better than to be surrounded by uninformed, clueless people, such as I was years ago.

 

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a Certified Master Trainer with the AGE-u-cate Training Institute. Through her company Enlighten Eldercare,  Julie provides training and educational programs on elder caregiving for family and professional caregivers.  She is an instructor and the Interim Director of Gerontology at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.

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