In 2003, Joanne Koenig Coste’s amazing book, Learning to Speak Alzheimer’s was published for the first time. And though some books get sorely outdated in a decade’s time, this is not one of them. Written from personal experience with her husband’s battle with the disease and from her professional experience of working with patients and their loved ones alike, Coste lays out her philosophy of care called “habilitation.”
Habilitation for Alzheimer’s disease has five tenets:
- Make the Physical Environment Work
- Know that Communication Remains Possible
- Focus Only on Remaining Skills
- Live in the Patient’s World
- Enrich the Patient’s Life
In each, she provides eye-opening stories of real life scenarios. But the most precious part of this book for me was the treasure trove of practical suggestions that she provides.
For example, she shares a story of how a caregiver was making a bowl of chicken noodle soup for the patient. Because the patient was sitting quietly at the table and seemed enthralled with a bird outside, she simply walked up behind her, laid the bowl in front of her and sat down. At that point, the patient picked up the bowl, threw the soup in the caregiver’s face, and started screaming, “Get out!” Startled, but wise, the caregiver defused the situation by leaving the house, cleaning the soup off of her face, changing her sweater, and then went around to the side door and knocked. The patient answered the door and welcomed her in as a dear old friend.
Coste explains that the situation could have been averted if the caregiver had simply not approached her from behind and had announced what she was doing. Because she quietly “snuck” up on the patient, it startled the patient and disoriented her to the point of forgetting who her caregiver was. Yet, the caregiver was wise to not try to reason with her by trying to get her to remember who she was. She “lived in the patient’s world,” recognizing the fear behind the anger, promptly left as she was being demanded, and gave the patient time to reorient. By coming to the side door, reintroducing herself, and not reminding or scolding the patient for the incident, she “enriched the patient’s life” by maintaining the patient’s dignity.
Another practical example that Coste offers has to do with “making the physical environment work” in the bathroom. She suggests that for those who have trouble with toileting that a picture of a toilet be hung on the bathroom door. She also suggests painting the walls a darker color than the white toilet so it stands out more in the room. For those who get up in the middle of the night (and sometimes use the closet instead of the bathroom), she suggests getting reflective tape and marking a path to the bathroom.
One of the things that I most appreciated about this book is that she offers suggestions and advice for the various stages of Alzheimer’s from when a person is first diagnosed until the later stages. She acknowledges that so much change takes place throughout that journey and that each patient is unique.
Having had the privilege of knowing several Dementia patients and their caregivers throughout my experience of being a Pastor for 17 years and Hospice Chaplain for the last 6 years, I found myself secretly wishing that every caregiver would be given this book when their loved one is diagnosed. It honors the patient as a person and not a problem. You see, my philosophy of care for Dementia patients is that though the brain is being ravaged by the disease, the core of the person still remains intact. Just because they act strangely at times, say confusing things, or in the later stages say nothing at all, doesn’t mean that they are not a person worthy of respect and dignity.
For me, this meant that even for those who were completely silent and could not communicate with me at all, I would still sit with them, hold their hand, talk to them, read to them, and sing to them. Some may have felt I was wasting my time as they undoubtedly were not able to understand what I was saying. But I believe that the love and the care that I had for them was somehow conveyed to their inner person. Though they may not be able to understand the words “I love you”, I believe the love was conveyed nonetheless.
Because this is my philosophy of care for Dementia patients, it is no wonder that I not only enjoyed this book, but highly recommend it to everyone who is affected by this terrible disease.
To purchase the book on Amazon, click the image of the cover above. Thanks.