by Dotty St. Amand
November is National Alzheimer’s Awareness Month, National Family Caregivers Month, and National Hospice Month. While each designation focuses on an important issue, the connection between the three is significant.
Alzheimer’s disease is a progressive illness for which there is no cure. In spite of treatments that help people remain more independent and in the earlier stages for a longer time, the reality remains that we cannot stop the disease course. The person will gradually progress through the early and middle to the late stages of Alzheimer’s disease.
Once a person is experiencing middle and then late stages of Alzheimer’s disease, he will be dependent on a caregiver for daily care and assistance. In most cases, that caregiver is a family member.
Finally, the connection between the person with Alzheimer’s, the family caregiver and hospice evolves as the person progresses to the late stage of the disease, which can last for several years during which the person requires total care.
In late, or end stage Alzheimer’s, the person is not able to communicate verbally, doesn’t recognize people including family members, cannot move, is incontinent, has trouble swallowing and experiences decline in overall physical health. The overall decline results in frailty that makes it difficult for the body to fight complications such as pneumonia, infection and coronary arrest.
As scary as that sounds to caregivers who are now facing early or middle stages, gaining knowledge and preparing to address these challenges is critical. Never is it so important for the family to rally around the person and advocate for the best possible care for the final days and years of the person’s life.
While the person is no longer able to verbally communicate basic needs and feelings, non-verbal cues are critical. Caregivers can help address concerns by paying close attention to signs that the family member’s condition has changed. Look for clues that the person may be experiencing pain – grimacing, moans and facial expressions can be telling.
Focus on the person’s body position at bed rest. If his arms and legs are tightly curled in an apparently stressed manner, ask yourself if this could be a signal of pain. Family caregivers are the best source of information for the hospice and nursing home staff. Help them understand the nature of your family member’s personality and clues that may be signals of distress for him.
Ask for hospice intervention earlier rather than later. Hospice offers palliative care that focuses on providing comfort and symptom relief without aggressive medical treatment in the end stages. Often caregivers do not realize that hospice provides care for end stage dementia.
In our community, caregivers have an advantage with the availability of services offered by Hope Hospice. While caregivers may think hospice is only for the person’s final days, the reality is approximately 20 percent of people on Hope Hospice care receive services for over one year. It is common for persons with Alzheimer’s disease to receive hospice services for more than 12 months.