To fully appreciate my mother’s story, I must describe it in the context of our long-term care (LTC) system. Drs. Rosalie and Robert Kane described the essence of LTC as “providing services for persons experiencing functional decline while living in their home, apartment, congregate living environments, or institutions.¹ Millions of caregivers, both unpaid and paid, provide LTC services for persons identified as having dementia.² Dementia is a general term used to describe “mental decline that is severe enough to interfere with daily living.” ³ At least half of persons with dementia in the United States are living in residential care and assisted living (RC/AL) facilities providing LTC services.⁴ These facilities are often components of continuing care retirement communities (CCRC), of which there are 2,000 nationally. ⁵

My 95-year-old mother lived independently in Hemet for 10 years after the death of my father. Hemet is a city in southern California that is eighty miles from my home. In March, 2024, to address our collective impression that my mother was increasingly forgetful, but safe, we hired day-time caregivers for 40 hours a week, at a cost of $6,000/month. To minimize the overall costs, I would routinely stay with her over the weekends.

Finally, in early August of 2024, my mother was able to admit to herself that she no longer felt safe, but did not want to live with me. We began to explore board-and-care and assisted living facilities. Although we described my mother as being mildly cognitively impaired to the admission coordinators at the facilities, no one mentioned that her cognitive impairment might be an issue in terms of the appropriateness of admission to their facility. In the state of California “mild cognitive impairment, as defined in Section 87101 (m) of Title 22, is not considered to be dementia”.⁶ After two false starts, and a dementia screening test for my mother, she was admitted to a memory care unit of a non-profit and religiously affiliated organization. I admit that I was ignorant of the regulations related to dementia and LTC services in California.

This experience has helped me understand how important it is for family members to be well informed about regulations related to dementia care and LTC services. For example, the California Code of Regulations Title 22, Section 87705-Care of the Persons with Dementia. lists requirements that must be met by facilities advertising that they provide care for persons with dementia.⁷ Additionally, regulation of CCRCs is shared by the Continuing Care Contracts Section (CCCS) and the Adult and Senior Care Program [CCLD\ASCP](ASCP), both under the Community Care Licensing Division (CCLD) of the California Department of Social Services.⁸

I realize that distinguishing between a diagnosis of mild cognitive impairment and dementia is not straightforward. A systematic review published in JAMA Internal Medicine (2015) described screening tests used for dementia, including the Mini-Cog test, the ACE-R, and the Montreal Cognitive Assessment, among others.⁹ If a person is categorized as having dementia rather than mild cognitive impairment, this requires that a facility meet the requirements established in 22 CCR § 87705.⁷

I now recognize that it is possible that some facilities may be less inclined to require screening of potential residents to distinguish between mild cognitive impairment and dementia, particularly as this is a physiologically dynamic process.

When my siblings and I were looking for an alternate living situation for my mother, it was something of a crisis for our family. We were concerned about my mother’s safety, the economic costs of care, and the practical consequences of my living 80 miles from my mother. Although we have been able to resolve our immediate family crisis, I realize that other families will benefit from being well-informed about the regulations related to care of persons with dementia.⁸ I have learned a great deal from my mother’s journey and hope that others may benefit from this story and my mother’s journey.

References

1. Kane, R.A., Kane, R.L., Reinardy, J.R., & Arnold, S. (1987). Long-term care. Principles, programs, and policies. Springer Publishing Company.
2. Alzheimer’s Association (2024). Alzheimer’s Disease Facts and Figures. Alzheimers Dementia 2024; 20(5).
3. Ray, S. & Davidson, S. (2014). Dementia and cognitive decline evidence review. AGE UK Research.
4. Carder, P.C. (2017). State regulatory approaches for dementia care in residential care and assisted living. The Gerontologist57(4),pp 776-786. https://doi.org/10.1093/geront/gnw197
5. California Department of Social Services. Continuing Care Retirement Community. Cdss.ca.gov/continuing-care-communities
6. UCSF Weill Institute for Neurosciences: Memory and Aging Center. https://memory.ucsf.edu
7. California Code of Regulations, Title 22 § 87705 Care of Persons with Dementia
8. California Department of Social Services. https://www.cdss.ca.gov/inforesources/community-care/continuing-care/laws-and-regulations
9. KKF Tsoi (2015). Cognitive tests to detect dementia: a systematic review. https://jamanetwork.com