The Rising Tide of Alzheimer’s

Kansas City Hospiceby Judy Waechter RN, CRRN, Clinical Liaison, Kansas City Hospice & Palliative Care

Alzheimer’s disease is responsible for more deaths each year. Even worse, the disease is contributing to many more cases of poor health and disability. The illness lasts so long before death. Much of that time is spent in a state of disability and dependence. Therefore, the public health impact is far greater.

November is Hospice Month, Alzheimer’s Awareness Month and Family Caregivers Month. Although most months have multiple recognitions, these three have an unmistakable bond connecting them.

Alzheimer’s is a very burdensome disease, not only to the person with the disease, but also to their families and informal caregivers. The baby boomer generation has already begun to reach age 65 and beyond, the age range of greatest risk of Alzheimer’s. As this population increases, so does the number of Americans with Alzheimer’s or other dementia.

As deaths due to heart disease continue to decline, down 11% from 2000 to 2015, deaths from Alzheimer’s in the same period increased 123%. It is the only top ten cause of death that cannot be prevented, cured or even slowed. Nationally it remains the 6th leading cause of death and continues to be the 2nd leading diagnosis in hospice.

The Rising Tide of Alzheimer’s Disease

Wednesday, November 14, 2018, 9-12 at Matt Ross Community Center

  • 8:30 Registration and complimentary continental breakfast.
  • 9 am – The Conversation Project: Advance Care Planning for Families and Loved Ones of People With Alzheimer’s Disease or Other Forms of Dementia. Presented by Judy Waechter RN, CRRN Clinical Liaison, Kansas City Hospice & Palliative Care.
  • Keynote The Future of Alzheimer’s Disease: Developing Innovative Models of Care. Presented by Jeffrey Burns, MD, MS, co-director of the KU Alzheimer’s Disease Center.
  • 3 CE credits for Nursing and Social Work.

Beginning a Conversation

It’s not easy for anyone to begin a conversation about how they want to live at the end of their life, what care they do or do not want. But it’s more difficult if your loved one has Alzheimer’s or another form of dementia. This conversation needs to happen much, much earlier.

The reason is simple: as the disease progresses, the ability to think and share thoughts declines. It will become increasingly more difficult for them to share wishes. Yet knowing their wishes will be a critical guide to help you through the decisions you have to make.

People commonly say “it’s too soon” as the reason to postpone these conversations. Typically it is always too soon – until it’s too late. People hesitate because it seems unkind or it’s scary. There is no single way that people with Alzheimer’s or other forms of dementia think about or react to their symptoms. But most people with dementia are more aware than we think they are. Many, perhaps most, experiencing cognitive decline will feel frightened, vulnerable and increasingly lonely.

Having the conversation about care, especially care at the end of life, isn’t an intrusion or unkind. On the contrary, it may be the most intimate way to promise your loved one that you will be there for them. By listening carefully and respectfully, you share their worries and promise that even when they lose the capacity to make decisions, you will be their voice. You will respect them and their wishes. They will not disappear.

Being an Alzheimer’s Caregiver is Hard

Alzheimer’s is hard for families and caregivers. Having early conversations is important to avoid the guilt, uncertainty and depression that can accompany making these decisions on your own. The upcoming seminar will try to give tangible ways that you can make a difference.

Families and caregivers are the keeper of a loved one’s wishes. As their most important advocate, caregivers need to make sure their loved one’s care team knows their wishes and follows them as closely as possible.

Alzheimer’s is a brain disease. We need to treat it like a disease and not like a stigma. If you are ashamed or embarrassed about what is happening, if your desire to protect causes you to hide, you won’t get help. Your loved one does not have a choice. You do.

Advances and Research

Nationally and here in Kansas City, the healthcare field is struggling to provide optimal care to the growing population of people affected by Alzheimer’s. As our population ages, Alzheimer’s is poised to become a national crisis- socially, medically & financially. There is currently no proven cure or treatment to delay its progression. 

One way to stop Alzheimer’s is to prevent it in the first place. The University of Kansas Alzheimer’s Disease Center leads the prevention field in Alzheimer’s disease. It’s one of only 31 nationally-designated centers by the National Institute on Aging, part of the National Institutes of Health.

The Center hopes to improve diagnosis, care, and educational resources for Alzheimer’s disease patients. 

Kansas City Hospice is committed to providing compassionate care to the people of the greater Kansas City area. A leader in end of life care, you can count on for information and resources for dementia both at home and in care facilities. Call 816.363.2600 with any questions.


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