Linda Rogen knew something was wrong. She was forgetting cups of coffee on colleagues’ desks; she forgot her usual yoga routine too, but her doctor told her it was anxiety and depression. In March 2021, at age 69, she was diagnosed with early-stage Alzheimer’s disease, a progressive brain disease. Linda is one of millions of people diagnosed with Alzheimer’s every year. She is considering her options at the end of life and having necessary conversations with her loved ones about her values and priorities. With the help of a death doula, an end-of-life care and options expert, Linda filled out her advance care planning documents, including the Compassion & Choices Dementia Values & Priorities Tool®. She shared these with her family. 

As reported by the Alzheimer’s Association, 6.7 million Americans age 65 and older are estimated to be living with Alzheimer’s disease, the most common form of dementia. Alzheimer’s and other forms of dementia cause changes to memory, language, thinking and personality. Dementia also affects the ability to make decisions, making it difficult for people living with dementia to express their wants, needs and wishes. 

In the United States, people with dementia, like Linda Rogen, and their caregivers are leading the way in improving dementia care. Caregivers are an important piece of dementia care, and support programs around the country provide individuals caring for people with dementia with education, counseling and respite care. 

There are many innovations in dementia care around the globe. As highlighted in the New York Times on July 3, 2023, in the Netherlands, the Dutch government has financed “dementia villages” to provide safe spaces for people living with dementia. Unlike traditional memory care facilities, these villages sprawl across a secluded neighborhood that includes parks, movie theaters and restaurants.

In Japan, which has one of the oldest populations in the world, 4.6 million people are living with dementia and the number is expected to rise significantly in the near future according to the Alzheimer’s Association. As reported in the Guardian (Jan. 14, 2018), the Japanese government is experimenting with different types of care and awareness campaigns. In 2015 they launched the New Orange Plan, a public health policy designed to raise awareness and understanding of dementia. The plan is attempting to move towards an institutional, community approach. In some towns, volunteers wearing bright orange bibs distribute leaflets with dementia care information. 

Initiatives like “Dementia Friends” encourage people to learn about dementia and turn that understanding into action and resources like the World Health Organization’s “Towards a dementia- inclusive society: WHO toolkit for dementia-friendly initiatives,” which seeks to reduce stigma and discrimination.  

Advance planning is also critical to managing a dementia diagnosis and determining your path of care. Compassion & Choices is helping transform how people live — and how they die  — with  dementia in the United States. Determining and documenting values and priorities helps to ensure people get the care they want and avoid care they do not want. 

In 2012, Compassion & Choices began sharing its free Dementia Values & Priorities Tool®. Since then, the landscape around dementia care has changed dramatically, moving toward more evidence-based research on advance directives and a more engaged cultural view of a dementia diagnosis. The latest tool addresses many facets of the ongoing cultural conversation around end-of-life care for dementia patients and their caregivers. 

The updated Dementia Values & Priorities Tool® incorporates feedback from supporters, volunteers, community focus groups and clinical experts to address the unique needs people face as dementia progresses. The new and improved Dementia Values & Priorities Tool® is 100% confidential and doesn’t require a password or account to access. Videos embedded within the online interactive tool provide information on key terms in plain language. It also includes a custom experience with the option to skip a question as well as open space to enter additional personal details. 

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