Restoring Dignity to Those with Dementia

Jan 21, 2015, 4:00 PM

Judy Berry is the founder of Dementia Specialist Consulting and the Lakeview Ranch Model of Specialized Dementia Care in Darwin, Minn., and a 2010 recipient of the Robert Wood Johnson Foundation (RWJF) Community Health Leaders award.

I live in rural Minnesota, and my passion is to make a significant contribution to improving dementia care in our society and to be an advocate for all seniors with dementia in their quest to maintain their basic human right to dignity, choice, and quality of life until their death.

My mother, Evelyn Holly, passed away 16 years ago. She spent the last seven years of her life being bounced from one nursing home or residential dementia facility to another, and in and out of hospital geri-psych units, all because of her so-called “challenging and aggressive behavior.” She spent the last year of her life strapped in a chair and drugged so she would be “compliant.” I imagine many of you have had similar experiences. Click on this link to view a video about my personal struggle with dementia care—a struggle that has fueled my passion to improve it.

After many years of heartache and frustration in my struggle to find appropriate care for my mother, and after being told repeatedly by others in the health care industry that the kind of dignified care that I visualized was impossible because it was too expensive, I discovered that I could not find any financial support for trying something different. I decided to use my own life savings to try to develop a model of specialized dementia care that would focus on the unmet emotional and spiritual needs of persons with dementia, many of whom are unable to communicate those needs, and to meet their physical needs as well.

I left my job as a regional sales manager for a BBQ rib company and, at age 55, became the founder, owner, and CEO of Lakeview Ranch, Inc., a place where people with dementia and their families can call home and where they can live out their lives with the love, dignity, choice, and the quality of life they deserve. Today we have two rural residential homes in Minnesota, with 80 highly skilled staff who provide the kind of specialized dementia care that meets our residents’ physical, emotional, and spiritual needs. We focus on each resident's remaining abilities, allowing for the highest quality of life possible, while maintaining dignity and individual choice.

I started this project 15 years ago with the help of 15 seasoned health care workers. The Lakeview Ranch Model of Specialized Dementia Care® has proven that unspoken and unmet needs are the underlying cause of most challenging and aggressive behavior among people with dementia and the top reason for rampant unnecessary hospitalizations and overmedication, which have sent health care costs spiraling out of control—to say nothing of robbing our seniors of the dignity and quality of life they so deserve.

From the beginning, I have chosen to serve all persons with dementia regardless of their financial resources—a decision that has consumed my entire life savings. When I knew I could no longer supplement payments out of my own savings, and when I realized the government would only pay about half of what it costs to provide this level of care, I had to find another way. I refused to cut staff levels and specialized training, and I chose not to limit services to only wealthy private-pay persons.

I knew there had to be another vehicle to raise the money necessary to continue this kind of care. The Dementia Care Foundation, a Minnesota non-profit 501c3, was born to provide scholarship funding for Lakeview Ranch residents. Between 2000 to 2014, the Dementia Care Foundation provided more than $1.5 million in supplemental funding to ensure equal access to low-income seniors on Medicaid to our appropriate, high-quality specialized dementia care.

In 2009, after the economy crashed, donations for the foundation were significantly down, and donors willing to part with their money in uncertain economic times became scarce. Then, on May 3, 2010, I received an email from the RWJF Community Health Leaders (CHL) program, informing me that I had been chosen as a finalist for the CHL award.

After completing the vetting process, and with the amazing support of many family members, local community leaders, physicians, and other professionals, I was notified that I had been chosen as one of the 2010 Community Health Leaders. It was like a dream come true. The monetary award would help provide funding for the Medicaid gap for many of our residents throughout the next year. It was like a miracle, and its message was: Together we can change dementia care in America and around the world!

My desire is to collaborate with people with similar passions to achieve these goals and to convince government payers, insurance companies, and other payers of the significant savings and cost-effectiveness of pro-active, appropriate disease management that meets the emotional, spiritual, and physical needs of all persons with dementia. My hope is that payers will re-appropriate funding to pay for all necessary services and tie reimbursement rates to positive health and quality-of-life outcomes.

By changing the appropriation of health care funding from reactive models of dementia care that focus on managing and treating symptoms to proactive models that specialize in appropriate and high-quality, specialized dementia care that meets physical, spiritual, and emotional needs, we reduce the illness burden to our loved ones and help them experience happier, safer, and more secure end-of-life journeys. Validating each person’s humanity (regardless of their ability to communicate) while ensuring their basic human right to dignity, choice, and the highest quality-of-life possible also significantly reduces the overall economic burden of dementia to the health care system, families, corporations, and others.

Global Collaboration

Dementia is a global issue, and families all over the world are experiencing the same frustrations and pain from insufficient access to appropriate services and support for loved ones with dementia. On a recent trip to Nairobi, I had the opportunity to meet with David Ndetei, PhD, DSc, director of the Africa Mental Health Foundation, and learned of his passion to provide support and education to families there. Access to information, and support to disseminate information in a way that is culturally acceptable, is an area in which we found we could partner. We have, for the last eight years, provided dementia training materials to medical school students at the University of Nairobi. When I travel to Nairobi, I conduct support and education groups with families that are caring for loved ones with dementia.

I have also collaborated with Im Ja Choi, MS, a 2011 recipient of an RWJF Community Health Leaders award and founder of Penn Asian Senior Services (PASSi), an organization of 350 home care workers who are cultural and linguistic specialists in caring for elderly people of Korean, Cambodian, Chinese, and other Asian backgrounds. In 2013, I conducted dementia training for PASSi home care workers with the use of interpreters.  The trainings improved caregivers’ and interpreters’ overall understanding of Alzheimer’s and the various other causes of dementia and changed how they understood and interacted with clients and family members. This improved overall health outcomes and reduced health care costs.

Im Ja Choi and I presented the results of our collaboration on the importance of cultural competency in dementia training at the 20th World Congress of Gerontology and Geriatrics in Seoul, Korea, in June 2013. It is truly amazing what can be accomplished when people with vision and passion work together!

I recently retired from my ownership of Lakeview Ranch, Inc., and I am now sharing what I have learned through the development of the Lakeview Ranch model with others around the country as a consultant.  The need to change the paradigm of dementia care, which must first address caregiver perceptions about advancing dementia, is critical!  I do this through family and professional consultations, specialized staff and professional training, and community education on effective communication skills and how to recognize and meet emotional and spiritual needs of each individual along their journey. I can be reached on my website at dementiaspecialistconsulting.com.

This commentary originally appeared on the RWJF Human Capital Blog. The views and opinions expressed here are those of the authors.