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Palliative Care for Those Living With Dementia

Founder of Palliative care
Founder of Palliative care
Dame Cicely Saunders is the founder of Palliative care.

I learned about Palliative care about two months before my Mom passed away. After learning about what it had to offer, I was frustrated that I didn’t know about this type of care sooner.

Palliative care focuses on improving the overall wellness of individuals with serious illnesses. It addresses both the symptoms and the stress of living with a chronic disease. Frequently, it involves support for loved ones or caregivers. 

Palliate comes from pallium, the Latin word for ‘cloak.’ To palliate is to cloak, or cover-up, the symptoms of an illness without curing it. This meaning grew into the idea of alleviating or reducing suffering. Interesting, yes?

Most people are familiar with hospice care and regularly confuse the two courses of treatment. Hospice is comfort care without curative intent; the patient no longer has curative options or has chosen not to pursue treatment because the side effects outweigh the benefits. 

For people with a severe and potentially life-threatening condition, palliative care is available at any time, regardless of the illness stage. It doesn’t depend on your life expectancy.

Hospice VS Palliative Care

In contrast, hospice care is only available at the end of life, when an illness is no longer responding to treatment. At this time, the individual may decide to stop treatment and begin hospice care, also known as end-of-life care.

Focusing on a person’s overall comfort, including their emotional, physical, and spiritual well-being is the goal of both types of care. 

Hospice is considered a form of palliative care. However, receiving palliative care doesn’t necessarily mean you’re in hospice.

Why Palliative Care?

For those who are living with dementia and the loved ones who care for them, Palliative care can be a blessing. People with dementia begin to lose the ability to feed themselves and the ability to eat. They forget how and why they need to eat. Families and caregivers often must face heartbreaking decisions when a person can no longer eat. They may have to decide whether to use artificial feeding. Unfortunately, medical research shows that this feeding method does not work to prolong life. Feeding through a tube to the stomach or through a vein might even cause more lung infections and pneumonia.

Additionally, can you imagine trying to prevent someone from pulling out a strange thing coming from their bodies? In my opinion, it’s unnecessary and a bit cruel.

Dementia moves at such a glacial pace that family caregivers begin to do more and more without even realizing it, and they become exhausted. They get used to the slowly worsening “new normal.” The Palliative care team’s primary goal is the patients’ quality of life. Because family members are also affected, quality of life care is usually extended to them as well.

Navigating the latter stages of Alzheimer’s disease is difficult for everyone involved. By incorporating Palliative care navigating this particular timeframe can be more manageable. Pain is often challenging to assess and diagnose in people with dementia. Our loved ones become unable to express their pain in a way that we can recognize.

When To Use Palliative Care

Determining when our loved ones are entering the terminal phase of their disease is also challenging. That’s where I was with my Mom. I assumed she would live another two to three years. Too late, I recognized the early signs that she was farther along in her disease. Had I been able to obtain Palliative care, a trained professional might have been able to point out these signs.

Even after she fell and broke her leg, I thought Palliative care was appropriate. We ended up with hospice care because, at the start of the Coronavirus pandemic, care companies were overwhelmed. Thankfully, for my Mom, hospice care was what she needed.

I frequently advocate for planning, putting a care team in place early, and learning about Palliative care is part of the process. It’s never too soon to learn about your options. Having advanced knowledge of what is available, you’ll be in better shape when the need arises.

Link to Episode on Palliative Care

The Article That Inspired This Topic!

 

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Fading Memories is a supportive podcast for people dealing with a loved one with memory loss. We interview people who have some of the answers and families currently on this journey. Join us and we’ll support each other along the way!

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