The Covid-19 pandemic has had a devastating impact on people living in nursing facilities. More than 50,000 residents of nursing facilities and other long-term care facilities in the United States have died from Covid-19. In March, the US Centers for Medicare and Medicaid Services (CMS), the regulator for over 15,000 nursing homes in the US, announced a “no visitors” policy for all facilities across the country.
That blanket ban cut off over 1.5 million older residents from family and friends, and had only limited exceptions for end-of-life visits. While some limits on visitors are reasonable to protect residents and workers from the virus, the ban fails to account for the serious risks posed by social isolation. CMS has recommended phased plans to states to begin allowing limited visitation, but most facilities remain locked down.
Beyond the health risks, social isolation increases the risk of poor treatment, such as overmedication. A 2018 Human Rights Watch report on older people, mostly with dementia, living in US nursing facilities found that people on their own, without family or friends visiting or communicating with the facility staff, and who have language barriers or disabilities that make communication between them and others difficult, are particularly at risk. People described how overmedication caused hallucinations and excessive sleeping, and how they were sometimes given drugs without their consent or knowledge.
It does not have to be this way. Older people with dementia have a right to receive support for their dementia and to consent to or refuse medication.
Today, Human Rights Watch released a guide about US nursing facility residents’ rights concerning medication in easy-to-read formats, available as an electronic or print leaflet and as a video. This guide aims to fill an important gap, supporting older people in knowing and claiming their rights. It highlights some of the resources available to people living in nursing facilities, such as long-term care ombudsperson programs that advocate for individual residents’ rights.
Human Rights Watch produces easy-to-read products to make its research more accessible to people with disabilities, including dementia, and to others with difficulties reading long and complex texts.
Under the US government’s current restrictions on nursing home visitors, it is even more important that older people with dementia have every opportunity to advocate for themselves. People do not check their rights at the door when they check into a nursing facility, and should get resources that can support them, and their families and friends, to know and claim their rights.