My person with dementia has been hospitalized three times this month with an infection that doesn’t seem to get better. The doctor has suggested that we consider palliative care. What is this and what does this mean?
At some point in this disease progression the disease becomes terminal and decisions will have to be made around the extension of life. The brain is in control of the body’s ability to manage illnesses though our immune system and the disease in the end stages will affect the person’s ability to fight off infections and recover from infections. Sometime more medication is not appropriate as the medication cannot be absorbed or used by the body to fight of the infections. The doctor may begin to have the conversation with the care partner and family members about withdrawing active ‘treatments.’ This is not to mean that the person will not be treated for pain, or be made to feel comfortable. Sometimes decisions around the late stage will also include decisions whether to provide a feeding tube, ventilation and other active tests and supportive surgeries. These decisions are all very difficult and stress producing. Having access to a spiritual advisor, trusted and unbiased family friend, a counsellor, or the palliative team at the hospital are all good supports to have at this time. Palliative care can be accessed at any time in the disease process but most often after several visits to the hospital for severe infections or other health events the decline the person with dementias abilities even more. At this stage the person with dementia will no longer be eating, speaking, or moving on their own. They may sleep for most of the day. They may not respond to visitors or may not recognize close family members. All their care needs are being provided for. At this point in time the person with dementia may also stop eating or refuse to eat or may be incapable of swallowing food that is presented. Palliative care is symptom management and care and support at the end of life for both the person with dementia and the care provider.