Dementia and Hospice Care

What is Dementia?

Dementia is the loss of cognitive functioning — thinking, remembering, and reasoning — to such an extent that it interferes with a person’s daily life and activities. Some people with dementia cannot control their emotions, therefore their personalities may change. Dementia ranges in severity from the mildest stage, when it is just beginning to affect a person’s functioning, to the most severe stage, when the person must depend completely on others for basic activities of living.

As people grow older, dementia is more common (about one-third of all people age 85 or older may have some form of dementia), but it is not a normal part of aging. Many people live into their 90s and beyond without any signs of dementia. There are several different forms of dementia, including Alzheimer’s disease. A person’s symptoms can vary depending on the type. Think of Dementia as an umbrella, under this umbrella are many conditions you may have heard of: 

• Alzheimer’s
• Lew Body Dementia
• Vascular Dementia
• Frontotemporal Dementia
• Parkinson’s 
• Huntington’s 
• Mixed Dementia (Dementia from more than one cause)

The difficult part of dementia is sticking with one scale of progression because most patients don’t follow the same timeline. Every patient moves through the continuum of the disease at different times, at different paces, and typically they wax and wane. Underlying chronic medical conditions can affect how someone progresses through the stages of Dementia.

When should one consider hospice care for Dementia?

As a loved one’s mental dexterity declines, you may also notice the body begin to decline during end-stage dementia. During this time, the likelihood of developing complications, such as weight loss, dysphagia, aspiration pneumonia, skin failure (such as pressure ulcers), and urinary tract infections (UTIs), increases greatly. Family members must decide whether to seek curative treatment at the hospital for conditions like these, although these treatments can be mentally and physically taxing on a person who is cognitively impaired, while equally difficult for families. 

Unfortunately, even if the acute health issues resolve, they will probably recur. Because of this, the patient will never recover back to the functional level they were at before the illness. The difficult question is, should families forgo treatment in the hospital and opt for comfort care? When a family’s goal of care changes to focus on comfort, hospice should be considered.

How does Hospice manage these symptoms?

Managing symptoms of dementia patients can be difficult to manage as patients with end-stage dementia have difficulty communicating pain, shortness of breath, and needs. Hospice of Southern Illinois staff are experts at identifying non-verbal cues of suffering and can educate family members on how to care for their loved ones to decrease suffering. Other solutions could include the following:

• Medical care to alleviate symptoms and pain (including medications and medical equipment).
• Counseling about the emotional and spiritual impact of the end-of-life.
• Grief support for the families of dementia patients.

Dementia can be unique – families have to grieve losing their loved one twice –when the patient stopped being “mom” and when they leave the earth – dealing with the guilt of not providing enough care – dementia is a long affair– families have to work, care for other family members, and themselves as this illness occurs over years. Let Hospice of Southern Illinois help. 

Supporting You and Your Loved Ones

A person-centered care model is how we approach caring for individuals and their families at the end-of-life. Hospice of Southern Illinois provides the personal care, attention and comfort during the final weeks and days of a loved one’s prognosis. We want to ensure your loved one’s comfort and dignity remains a priority. The circle of care for our patients starts with their needs and wishes and extends out to family, friends and caregivers. We are here to support and help you through what to expect too.

• Managing pain and other symptoms – we carefully monitor pain levels and other symptoms, coordinate proper equipment, and evaluate medications to provide as much comfort and peace as possible.
• Providing support – hospice offers regularly-scheduled visits from our care team to check in, provide education, listen, advocate, and explain what you need to know about the weeks ahead. Further, we offer emotional support to families along the way. Hospice care doesn’t stop there. For several months after the loss of a loved one, we continue to be available for bereavement support.
• Knowing what to expect – as the experts in end-of-life care, you can trust that we will work tirelessly to keep your loved one comfortable, supported and safe, all the while keeping you informed of any changes.

Safety in the Home

Caregivers are experiencing extreme challenges during the COVID-19 pandemic. We are ready to provide care in the home or home-like setting to ensure everyone’s safety. As an organization dedicated to providing exceptional care to the communities we serve, our uncompromising priority right now at Hospice of Southern Illinois is protecting our patients and families, our team members, and our community partners from exposure to coronavirus (COVID-19). Here’s what you can expect from us:

• Follow guidance from the Centers for Disease Control and Prevention (CDC) and the Illinois Department of Public Health
• Plenty of personal protective equipment (PPE)
• Increased education for families in their home or home-like setting
• Added telehealth services when face-to-face visits are not the best option
• The same person-centered care you’ve come to know and trust.