Earlier this week I attended medical Grand Rounds at the University of Washington given by Dr. Barak Gaster, a physician well informed about dementia care. He gave a comprehensive introduction to dementia demographics, screening, medications and how to have “the driving discussion.” But more importantly he emphasized the need to work with patients and families to do advance care planning. His introductory remarks included the idea that people with dementia are not getting good care in medical settings. While he did not express it exactly in this way, he implied that a traditional medical model that treats symptoms is not adequate for dementia. He used the phrase “dementia should be an organizing principle of good care,” by which I understood that the treating primary care physician, whose patient had a diagnosis of dementia, should consider that dementia be the primary, umbrella diagnosis that drives other decisions about treatment and care.
Dr. Gaster had an effective way to explain the need to do early advance care planning. I could easily hear him talking to a family: “Dementia patients can make rational and good decisions in the moment. Do you want vanilla or chocolate ice cream?” Not so hard. But conceptualizing the future is not an easy or likely ability as one progresses through the disease. Making one’s choices known early in the process is critical. Early care planning, when one does have capacity to express their goals and preferences in how they wish to be cared for, will offer guidance to their future caregivers. These care goals, made in consultation with family, friends, community and health care providers need to be documented in a health care advance directive.
The concept of care goals expresses a wish and recognizes that not all wishes are achievable. It is great language and helps to emphasize that the path of dementia is a difficult and imperfect one. In filling out a health care directive, the person with dementia is also recognizing that their designated caregivers are taking on a huge responsibility for many future decisions. In essence, a directive becomes a tool for families and the person with dementia to discuss and plan and imagine; and helps ensure that one’s wishes will be considered and hopefully honored. By expressing one’s wishes it may provide a person a sense of control – and I suppose we could use the word autonomy –and lessens the burden for families when difficult decisions need to be made in the future.
It is important to realize how much has changed in the 20 years that I have worked in the dementia field. At that time, in the professional community, we emphasized family caregiving and the stresses and burdens of caregiving. Previously when I counseled families we developed a care plan that was largely focused to a moment in time, with some understanding of what to expect in the future. I counseled families to attend support groups, to put safety issues in place at home, using better communication techniques and resources for respite care. The language and discussion has since changed substantially and we are inclusive of the diagnosed individual in programming and decision-making. Recently developed health care directives specific to dementia look towards long-range planning and explicitly involve the individual with the diagnosed disease.
Dr. Gaster has gained some national recognition in having developed a Health Directive for Dementia. https://dementia-directive.org/ In a simplified and easy to use form, he asks patients to answer four questions about care at each stage of dementia. Each stage is prefaced with a few educational sentences about the changes, deficits and care needs one might experience at each stage. It asks:
If I had____________ (mild, moderate, or severe) dementia I would want the goal for my care to be:
- To live for as long as I could.
- To receive treatment to prolong my life, but if my heart stops beating or I can’t breathe on my own then do not shock my heart to restart it (DNR) and do not place me on a breathing machine.
- To only receive care in the place where I am living. I would not want to go to the hospital even if I were very ill.
- To receive comfort-oriented care only, focused on relieving my suffering such as pain, anxiety, or breathlessness.
A second directive developed by End of Life Washington is the Alzheimer’s Disease/Dementia Mental Health Advance Directive. https://endoflifewa.org/alzheimers-diseasedementia-advance-directive/ Both documents are educational in describing some of the care and behavioral issues that typically arise during the course of the disease. Dr. Gaster is dedicated to using his Health Care Directive with his patients and enthusiastically advocates for others doing so as well, however, it remains within the medical model of care. The document developed by End of Life Washington is more detailed about all aspects of care and choice as families navigate the mucky waters of dementia.
In reading through the comprehensive Alzheimer’s Disease/Dementia Mental Health Advance Directive you begin to understand that no one can anticipate all circumstances but attempts to address some of the issues that can become contentious among family members. The directive addresses these difficult and sensitive topics.
- Driving: what might be the triggers that define taking away the keys and provides the opportunity to talk about personal and public safety.
- Financing: what are one’s values about using Medicaid funding for care? Is financial planning with a lawyer necessary?
- Preferences for who provides care: How does one feel about partner, spouse, children performing intimate care?
- Preferences for where one receives care? How important is it to remain at home? What are one’s preferences for memory care and secure units? Feelings about congregate meals or shared living and bedroom space?
- Issues that arise about aggressive and combative behaviors: what are the choices for medication use or hospitalization. Are these behaviors triggers for needing long-term care placement?
- Intimate sexual relationships: the appropriateness or comfort about maintaining the relationship or initiating new intimate relationships.
Each one of us has a personal sense of how we express our personal identity and humanity. For some, one’s sense of self may be reflected in an ability to have verbal and intellectual capacity and relationships. Another person may have a different sense of individual relationships and connection – the simple act of smiling, holding hands or singing is personhood enough. Both these directives help you think about what is important in your life and what is important for those with whom one shares a life.