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End-of-Life Care for Patients with Dementia

January 2023 Blog

 

Dementia is a term given to a group of degenerative disorders that affect memory, language, problem-solving and other thinking abilities severely enough to interfere with a person’s daily life. Alzheimer’s disease is the most common cause of dementia in older adults. Other relatively common causes of dementia are Parkinson’s disease, Lewy Body, Frontotemporal and Vascular.  

Dementias are incurable, progressive, and considered fatal conditions. Alzheimer’s disease has a typical gradual trajectory of 8-10 years from the time of diagnosis to the time of death. People with severe Alzheimer’s disease are completely dependent on others for their care. In late stages of the disease, patients may be in bed most or all the time as body functions shut down.  

Recognizing when a loved one needs specialized care and understanding how the illness progresses helps patients and families make informed decisions about end-of-life care. Here are some special considerations for end-of-life planning if you or your loved one suffers from dementia. 

Advance Care Planning  

Advance Care Planning discussions help others understand a person’s values and wishes. Ideally, discussions about end-of-life care wishes should take place while the person with dementia still has the capacity to make decisions and share preferences about life-sustaining treatments. 

For example, a conversation with your loved ones about what good quality of life means to them, concerns about medical interventions in the late stages of a terminal disease and what would they wish the end of their life to look like could help with decisions about their future care.   

Preferences regarding end-of-life care should be discussed and documented. The completion of these documents is known as advance directives. Living wills and Health Care Proxy forms are some examples of advance directives. Once these documents are completed, copies should be provided to your surrogate decision maker and your medical team.  

Palliative Care 

One consideration for dementia patients and their families is determining whether palliative care will be needed and when. Palliative care is an interdisciplinary team approach to person-centered care for patients who suffer from a serious illness. It is care that focuses on maintaining quality of life, managing symptoms, providing comfort, and supporting patients and their loved ones. Palliative Care can be provided at any stage of the disease process. Hospice care, however, seeks to provide palliative care when the estimated life expectancy is six months or less. Hospice care is specialized end-of-life care. It could be beneficial for patients in last stages of Alzheimer’s disease and their loved ones.  

Determining When to Seek Out Hospice Care 

One of the hardest decisions a family of a patient with Alzheimer’s disease can make is determining when it’s time for hospice care. One important consideration to keep in mind is that older patients tend to not only suffer from dementia but also carry the burden of other chronic medical conditions that could also impact their life expectancy.  

Patients in late stages of Alzheimer’s disease lose the ability to respond to their environment, to speak, and ultimately to control movement. The ability to handle the mechanics of toileting is lost, making patients more likely to be first incontinent of bladder and later of bowel. It is during this stage that patients may require around-the clock assistance with daily personal care. When a patient with dementia enters this late stage, they may have one to two years of life expectancy. 

It is during these late stages that patients with dementia lose the ability to speak and their swallowing becomes impaired. They may also forget to eat or lose their appetite and weight loss may occur.  Patients are at higher risk of pneumonia and other infections. These are signs that the actual dying process has begun and that death is likely in the next six months. This is also the time when a patient with advanced dementia is eligible for hospice care. 

 

Hospice of Orange & Sullivan Counties, Inc. has decades of experience providing compassionate care and aiding patients and their families through the end-of-life process. Our interdisciplinary team specializes in delivering medical care as well as emotional and spiritual support to patients in late stages of dementia and other terminal conditions. Contact us at (845) 561-6111.