Improving Alzheimer’s and Dementia Care: Truths & Lies I Told My Father
A person with dementia can be said to be inhabiting a different world with a different reality than the rest of us. Habilitation Therapy (HT) tells us that they cannot leave there to be with us, no matter how much we may want them to. (Alzheimer’s Association, 2011) It is the job of care partners to be with that person by traveling to their world. This is done by understanding what they are experiencing, and respecting — never negating — their experience.
If, in the world of a person with Alzheimer’s Disease or a related dementia (ADRD), she is 8 years old (not 80), and waiting for Mother to pick her up after school to go home and milk the cows, then that is the world to which care partners must travel. It doesn’t matter a bit that Mother died 50 years ago because that is not true in the reality where the person with dementia is living.
There are millions of people with ADRD living in the world today. Most of them are not being cared for using Habilitation Therapy, the comprehensive approach that the Alzheimer’s Association now considers to be a best practice. Instead, many dementia patients are cared for using the outdated but still widespread “Reality Therapy.” Someone using Reality Therapy would tell the person with dementia that she is 80, not 8, and that her mother died decades ago. Reality Therapy says that we must insist that the patient accept these facts in order to pull them back into our world.
Reality Therapy is logical and instinctual. The thinking is that things would be all right if only the person with dementia could get the facts straight. However, for Reality Therapy to work, people with dementia need to have fully functioning memories — which is exactly what they have lost. (Moore, 2010, Alzheimer’s Association, 2011, n.d., Snow, n.d.)
Tell a dementia patient that her mother has died, and one of two paths will unfold, both with the same outcome. Either she will deny that Mother is dead (“I just saw her this morning before school, and she was fine!”), or she will believe it to be true, grieving and in shock as she takes in the news for the first time. In either case, there will be high emotional turmoil. Soon, she will entirely forget the incident, though she will still carry with her a feeling of great upset. Later, she will again be 8 years old, waiting for Mother to pick her up after school. Repeated applications of Reality Therapy end no differently. This is why it is now considered ineffective and unintentionally cruel to all involved.
So what should care partners do instead? Habilitation Therapy gives the highest value to the emotional well-being of the person with dementia. (Alzheimer’s Association, n.d., p. 66) HT also leads us to ask: is it really a problem that sometimes this woman with ADRD believes sometimes that she is 8 years old and that her mother is just about to arrive? (Alzheimer’s Association, 2011) What if we didn’t try to correct these errors? Wouldn’t that allow care partners to help preserve her emotional well-being, dignity and calm?
Not attempting to drag the dementia patient out of their reality can be the most difficult aspect of Habilitation Therapy for many care partners. It requires them to knowingly accept what is not “true,” and sometimes even to actively tell lies — which in HT are called “therapeutic fiblets.” (Alzheimer’s Association, 2011, Moore, 2010) To do so goes against all training to always tell the truth — especially to one’s elders.
Do they really need to fib and let untruths stand unchallenged? Yes. Sometimes this is truly the wisest path. Fiblets are not told to mock the person with dementia, hurt their feelings, or exploit their weaknesses. Fiblets are best understood to honor what might be considered higher truths. These truths are that it is most vital to give any person with dementia a high-quality life where they are safe, comfortable, and can live with intact dignity and positive experiences. (Alzheimer’s Association, 2011) Being constantly corrected causes people with ADRD to feel disrespected, stupid, angry, confused, frustrated, sad and hurt. If challenging their mistaken ideas is both ineffective and destroys their dignity, then this habit needs to be stopped. (Snow, n.d.)
Typically important information about unmet needs is buried in dementia patients’ mistaken information. (Moore, 2010, Alzheimer’s Association, 2011) Take our example of the 80-year-old woman who believes she is 8 and waiting for her mother after school: She is making an important communication about how she feels and what she needs. This is information that, when decoded and used strategically, can help prevent difficult behaviors, and allow her to function at her best.
To decode this information, care partners need to know something about her life. In this example, it turns out that going home after school at age 8 to milk the cows made her feel she was fulfilling an important, grown-up function in her family. Connecting with and living in that time in her life may be the only way she can still communicate today how she feels and what she needs.
Care partners should consider this “meaningless” information to be an important metaphor for her life today. She might be saying, “I want to feel useful again,” “I am afraid I don’t have a purpose anymore,” or “I miss the feeling of working with others toward a common goal.” It could be that focusing her on simple, repetitive tasks around the house and praising her for her helpfulness would work toward satisfying these emotions. This is vital, because if care partners do not find safe and possible ways for unmet needs to be satisfied, the needs do not simply go away. Instead, they continually re-emerge and may eventually assert themselves with force in the form of anxiety, depression, withdrawal, rage, or other painful and difficult behaviors. (Snow, n.d.)
Therefore, an appropriate response in this example might be to tell the woman something like: “I got a phone call from your mother a little while ago, and she said she was going to be late. Why don’t we go and have a cup of tea and wait for her together? And you can tell me all about your life on the farm. Was it hard to learn how to milk?….” As a result, the woman gets to revisit and feel proud of her usefulness on the family farm. She is received by a caring listener, and can enjoy sharing a time that is still fairly clear in her memory. In the process, her troubled feelings may pass as her immediate emotional needs are met. It is likely that soon she will forget that she is 8, and waiting for her mother to arrive.
However, unless her ongoing needs for feeling purposeful are met, soon she will reconnect to that time in her history when she most felt useful. But if her care partners understand and use Habilitation Therapy, they will already know the drill. They can quickly decode what she is feeling, and move right into addressing her emotional needs. They will meet her in her world, and help her experience the kind of positive emotional state that lives at the very heart of Habilitation Therapy.
Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (n.d.) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum. Watertown, MA: Alzheimer’s Association.
Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (August 2, 2011) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum [Training Course]. Lawrence, MA: Alzheimer’s Association.
Alzheimer’s Association. (2011b). 2011 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia, Volume 7, Issue 2.
Moore, B. L. (2009) Matters of the Mind and the Heart: Meeting the Challenges of Alzheimer Care. New York: Strategic Book Publishing.
Moore, B. L. (November 20, 2010) StilMee™ Certification for Professionals: Working respectfully and effectively with people with Memory Loss [Training Course] Burlington, MA.
Snow, T. (n.d.) The Art of Caregiving. [Video] Florida: Pines Education Institute of Southwest Florida.
Bier, D. (2018). Improving Alzheimer’s and Dementia Care: Truths & Lies I Told My Father. Psych Central. Retrieved on April 1, 2020, from https://psychcentral.com/lib/improving-alzheimers-and-dementia-care-truths-lies-i-told-my-father/