Determine Understanding of Illness
Commonly, persons engaged in a conversation for ACP for a loved one with dementia may not have a full grasp of the illness or complex of illnesses. Often dementia is not seen as a terminal condition and, therefore, prior to giving information about the illness, it is important to inquire about the person's understanding of illness. Often, the history of the disease progression and the family journey has already been reviewed, and it is still important to inquire about their understanding of the illness today and what their understanding of the future may be. It is common, in my experience, to find persons with a long-lived experience caring for a loved one with dementia who are nevertheless unaware their loved one has a terminal illness that will render him/her unable to communicate, eat, walk, toilet, and live if the disease progresses to its end stage. A pitfall to avoid here is an unnecessarily lengthy review of all the previous testing and medical work-up.
Hope is inherent to medical care. Hope also changes throughout a dementia journey. Typically, when a person receives a serious diagnosis like dementia, he or she hopes that the diagnosis is wrong. This often fosters the ambiguity and ambivalence experienced by patients and families. Hope shifts to hoping for a cure. However, in dementia, people learn quickly that there is no cure and that there is a paucity of treatment options to slow the progression. Hope shifts again to living as well as possible with the illness to living as comfortably as possible with the illness. At some point in time hope shifts again to represent hope that becomes more difficult to talk about and stands often in direct contrast to the typical goals of medicine. Hope shifts to dying peacefully and hoping that your loved ones will prosper and live well after you have died.
Once again, the sum of the treatments doesn't add up to better care. Treatments need to be tailored when hope is directed toward living as comfortably as possible and dying peacefully. Keep in mind this time where hope resides in dying peacefully may last years. In breaching the subject of hope, I often ask for permission, contextualize, and then ask. This gives family an opportunity to describe where hope is at this time. Far too often people are readily able to describe everything they don't want, almost like a photographic negative. They don't want pain, nursing homes, to be a burden on others, or to use up their financial means, leaving their families without an inheritance. Asking about hope allows them to talk about what they want in the setting of advanced illness.
Normalize Feelings of Relief in Grief
The toll to caregivers has been well described in the literature. The patient gets the disease, and the family lives with the illness. Among the many feelings experienced by caregivers, guilt seems to stand out. Often caregivers find themselves making choices between things on a menu of items they simply don't want. I have yet to encounter a caregiver of a loved one with advanced dementia that hasn't experienced guilt during and after their loved one dies. In fact, in my experience, the guilt is twofold. They feel guilty about the decisions they have to choose from on their loved one's behalf and, secondly, they feel guilty because they know they will feel relieved when their loved one dies. I have yet to find a caregiver with a loved one in late Stage VI or VII that hasn't experienced this new form of guilt. In fact, many have hope directed toward their loved one dying in their sleep.
Tailoring and Anticipatory Guidance
As for many people caring for a loved one with advanced dementia, it is common that as the disease progresses from Stage VI to VII, they will need an increase in services either in or outside of their home in an institution. Independence will give way to safety, and their personal life will be tailored to meet their needs. Family often needs assistance in tailoring the medical life of their loved one, specifically around issues of medical treatments, interventions, and CPR. One example of anticipatory guidance is found in pediatrics, where loved ones are informed about what is next, what to do, and when to call. We apply this same principle in Watch Over Me.