I speak a lot about palliative care and how it relates to families facing a diagnosis of Alzheimer’s disease and am consistently shocked at the misconceptions that continue to exist. Many people think that palliative care is the focus in the last few weeks of life. What if we change the dialog, call palliative care “comfort care,” and start the discussions at the time of diagnosis when our loved one with dementia may still have some ability to contribute to the conversation?
To change the dialog, we must all understand that palliative care is specialized medical care for those dealing with serious illness. Palliative care focuses on easing the symptoms while relieving the pain and stress. A strong palliative care support team will consist of doctors, nurses, and social workers. The key is “serious illness.” Many can recover from serious illness with the proper treatment, but horrible side effects often accompany life-saving medicines. Palliative care is a patient-centered approach that not only addresses pain and symptoms but fears and anxieties surrounding the illness, treatment, and medications.
When it comes to Alzheimer’s disease, a healthy palliative care plan should be developed very early – at the time of diagnosis. In the early stages, the focus can be on the emotional stress of the diagnosis and the potential depression and anxiety that is often experienced by our loved ones. As the disease progresses, palliative care teams can help families work through triggers to some of the behavior issues and can provide families with tools to keep their loved ones safe. If the conversations begin early, our loved ones often have a chance to contribute to the discussion and share their fears and concerns.
Another essential aspect of palliative care is conversations about advance care planning. When discussions about palliative care begin early, our loved ones with dementia may have the opportunity to clarify their wishes before they are unable to remember and speak for themselves.
As a caregiver, you have the opportunity to open the dialog now and help shift the conversations to ensure your loved one lives every day of their journey as best they can with the least amount of stress and anxiety. Let your loved one have a seat at the table of the conversation, so they see hope for minimizing the impact of their symptoms on their daily life.
Palliative, or comfort care, is available at any age and any stage of Alzheimer’s. Please don’t wait for a physician to start the conversation about providing comfort care to your loved one. Together, we can keep the lines of communication open and help all understand that Alzheimer’s patients may progress to a point where they can’t understand or speak, but deserve the best quality of life from the time of diagnosis until the end of their journey.