If you’ve been following the news lately, you’ve probably heard about the controversial new drug designed to slow the progression of Alzheimer’s. And while its effectiveness is still being debated, the need to find ways to help patients at all stages of the disorder is very clear.
A neurodegenerative disease, Alzheimer’s is a growing problem in the United States, affecting approximately 6.2 million Americans age 65 and older. It is the leading cause of dementia, accounting for between 60% and 80% of all cases nationwide.
Yet many people are not that familiar with the details of Alzheimer’s, or how to care for a loved one with the condition. So on World Alzheimer’s Day—June 21, the centerpiece of Alzheimer’s and Brain Awareness Month—Capital Caring Health (CCH) offers the following to heighten awareness and knowledge about the condition, its progression, and the best care for end-stage disease, including Advance Care Planning (ACP) that can help guide care decisions.
Understanding Alzheimer’s and Dementia
To begin, Alzheimer’s is only one cause of dementia, a term that covers a range of symptoms including problems with thinking, memory, and behavior. Dementia can also be caused by other brain conditions such as Parkinson’s, Huntington’s, ALS, or Lou Gehrig’s disease. Advanced illnesses such as heart disease, COPD, or multiple strokes can also produce the condition.
Whatever the cause, dementia progresses differently for each individual—in some cases, showing few signs of the condition for years; in others, a rapid decline. However, all forms of dementia—including Alzheimer’s—are terminal. Those with advanced dementia usually die from health problems caused by the disease.
So while the pace of the illness may vary, almost every patient will need end-of-life care at some point. In fact, dementia accounts for nearly one in every five hospice admissions, according to the latest data from the National Hospice and Palliative Care Organization.
If there’s one thing the COVID-19 pandemic has taught us, it’s the importance of planning ahead for health care emergencies instead of waiting until they strike. Anyone with a serious or life-limiting illness, including Alzheimer’s or dementia, should use Advance Care Planning (ACP) as a means to share their preferences and values with loved ones about how they want to be cared for…now and through the end of life.
It can be hard to have such conversations at any time, since most of us are inclined to avoid or delay talking about disease and death, often until it is too late. But when the person you care for has Alzheimer’s disease or another form of dementia, the challenge rises to a new level. As Alzheimer’s patients begin to lose their memory, reasoning, and ability to communicate, it becomes even harder for them to express their wishes for care…and for you to get the information and guidance you need.
So the best time to start a conversation about ACP is before any treatment decisions need to be made. If you know your loved one’s values and wishes in advance, you will be better informed to make health care decisions on their behalf.
Toward that end, CCH is sharing resources from the experts at The Conversation Project—a national public engagement campaign. Among other materials, the project offers guides for how to talk about and document care wishes, including a special guide for caregivers of Alzheimer’s and other dementia patients. Included are suggestions on how to open a conversation on end-of-life care, what questions to ask, and other approaches to patients in varying stages of the disease such as:
–What matters to you for your end-of-life care?
–How did you feel when grandma died? What would you have wanted to do differently?
–What do you want, when your time comes?
–Who do you want to be your health care proxy; i.e., the person who can officially make medical decisions for you, once you can no longer make those decisions yourself? (Click here to find the healthcare proxy legal documents for your state.)
Advocate for Your Loved One
To keep a dementia patient’s healthcare team well-informed, The Conversation Project recommends two key steps:
- Paint a Portrait.
Describe who the patient was. What was the patient like when he/she was younger, what activities did they like, what do they care about now, what makes them laugh, what brings them joy? Or make a collage with pictures that show who they were over their lifetime and hang it in their room.
- Make their wishes clear.
Help the healthcare team know and respect the wishes of the person you care for. For example, write down their wishes and share this document with family and friends, the people who work at the assisted living facility, and their doctor or other members of the healthcare team. If the person lives at home, you can put the document in a colorful labeled envelope on the refrigerator for emergency responders to find, if needed.
Find help on how to talk to your doctor and the healthcare team here. Also, if you have any questions or need additional information on ACP, please contact us at 800-869-2136. Capital Caring Health social workers are available to help you with any part of the process.
Get the Right Care at the Right Time
Research shows that Alzheimer’s patients with hospice care have better pain control and are less likely to die in a hospital, giving their families greater satisfaction with end-of-life care.
When the time is right, CCH’s palliative and hospice care and support can make all the difference for dementia patients and their families by developing a comprehensive plan for each patient’s unique situation. The goal is to bring the greatest level of comfort to both patients and families, creating the best quality of life possible. Toward that end, we focus on alleviating pain and emotional distress, while meeting social and spiritual needs with counseling and support.
Along those same lines, we also help families understand how to best manage care, what to expect in the late stages of a condition, and how to provide support through the last phase of life. In recognition of the challenges of caring for a dementia patient, CCH has even created a monthly drop-in group called: Not Alone: Group Support for Loss Due to Dementia. For more information.
Through hospice’s specialized care and attention, many dementia patients find the peaceful environment they need and respond positively, while their families and loved ones find peace of mind. With Capital Caring Health’s support, care, and resources, there’s no need to be on this challenging journey alone.
For more information call 800-869-2136 24/7 or visit https://www.capitalcaring.org/get-help/our-services/hospice/