Late Stage Alzheimer’s: The Myth of Compassionate Care, Part 3

Part 1 in this series introduced you to the need for increased focus on palliative and hospice care for patients in the late stages of Alzheimer’s disease.  Part 2 took a closer look at some of the issues that relate to this need.  Today’s post will wrap up this series and will look closer at the results associated with patients and families faced with inadequate resources for late stage Alzheimer’s care.

 BAD THINGS THAT ARE HAPPENING TO PATIENTS AND FAMILIES BECAUSE OF INADEQUATE RESOURCES FOR LATE STAGE ALZHEIMER’S CARE:

• When geriatric behavioral units are unable to find placement families are told that the patient has been discharged and that they must come and get him and take him home because no placement can be found. This is in spite of the fact that the patient has been determined to be too dangerous to manage in a nursing home with professional caregivers.
• Families are advised that they will be “reported” to Adult Protective Services should they fail to come and get the patient.
• Families are told that they will be required to pay all hospital costs for additional days.
• Patients are placed far from home in rural facilities. Although care may be good, elderly spouses and working children are often limited in their ability to be present as advocates and comforters during this last passage.
• Hospitals may require a referring facility to accept the patient back, without regard for whether this placement will be able to meet the patients’ needs. Often these patients bounce back into the hospital for another round of tests and procedures and treatment and then referred on to yet another placement with yet another care team. Unfortunately, “these must accept for return at discharge” mandates can result in patients and staff being placed at risk.

 Late stage Alzheimer’s patients require specialized longer term post acute “skilled” or “transitional” care to provide a period of extended observation/ supervision and support, and intensive medical and behavioral management. Physical, Occupational and Speech therapies would be provided with emphasis on outcomes related to more stable and safe mood and behavior.

 Ultimately, the care team would be tasked with the creation and implementation of effective management strategies and comfort measures for the patient. Some patients will eventually cease behaviors with proper diagnosis, medical treatment and behavior management. Behaviors will also decline as the disease progresses and energy, strength and mobility decline. These patients are in the dying process.

 The level of care must be a hybrid combining the best of well-crafted skilled care and residential hospice care, relevant to these patients’ unique and complex physical, emotional, and spiritual needs.

 In our next post, we will share how you can get involved in supporting THE CARE!