Improving Alzheimer’s and Dementia Care: Emotions Rule
Habilitation Therapy (HT), a comprehensive behavioral approach to caring for people with Alzheimer’s Disease and related dementias (ADRD), is considered to be a best practice by the Alzheimer’s Association (Alzheimer’s Association, 2012). HT is best used for every interaction a person with ADRD has with their care partners, from the moment they rise until they fall asleep at night.
One of Habilitation Therapy’s primary goals is to create day-long positive emotional states for dementia patients (Alzheimer’s Association). His or her capabilities, independence and morale are thoughtfully and ongoingly engaged to produce a state of psychological well-being.
Why such an enormous focus on emotions? Given all the many deteriorating capabilities of dementia, why not instead focus on helping memory, reasoning, language, and other functionality that adults need in order to cope in the world?
It’s vital to remember that Habilitation Therapy is not Rehabilitation Therapy. Rehabilitation returns people to earlier, higher levels of functioning; such recovery simply is not possible with ADRD. Habilitation helps dementia patients use what functioning they still have at a more optimized level.
So, what do dementia patients have left, especially as their disease progresses? The ability to experience and maintain emotions, as well as to accurately perceive others’ emotions, remains intact right up until nearly the end. They can also consistently associate positive or negative emotional states with certain people, places or things.
Since HT works only with functionality that is still present, the emotional world is the strongest channel through which to impact a dementia patient. Taking the time to consistently create positive emotional states can reduce difficult behaviors, allow enjoyment – or at least better toleration – of care tasks. In this way, Habilitation Therapy can trigger states of calm, happiness, pleasure and self-esteem.
While it may be difficult or impossible for a person with dementia to understand a broader context for what triggers their feelings, they will consistently know that it feels bad to be scared, and good to laugh. They can also retain a feeling over time, though they may not recall what that feeling was originally about. In this way, a positive feeling can persist and help set the stage for “a good day.” The converse is also true; a negative feeling can be the precursor to “a bad day.”
Trying hard to figure their way through an increasingly bewildering world, people with dementia often become amazingly good at reading and responding to others’ emotional states. Care partners’ body language, facial expressions, and tone of voice add up to a strong message clearly received — often despite what is said in words. This is especially true as the patient’s spoken language capabilities deteriorate. Presented with subtle indications that something is positive, the dementia patient’s emotional radar tells them all is well. If they pick up something that says the contrary, they can become quite upset, though having no clue about what is actually going on.
We can use this knowledge to become aware of how our encounters set up emotional experiences. Compare these two approaches to morning care, a typical situation care partners encounter daily. Cynthia comes to visit her mother, Sylvia, who has a fairly progressed case of Alzheimer’s Disease. Cynthia is in a hurry and needs to get Sylvia’s care done quickly. We see Cynthia introduce the idea of bathing and dressing in two different ways. The first scenario does not use principles of Habilitation, but is played out in homes and facilities across the world:
Cynthia (looks grim, anticipates a fight and shows it in her face and body language; she greets her mother first thing in the morning): Mom, we need to get you into the shower and dressed for the day. Let’s get those pajamas off. (starts to remove Sylvia’s shirt) Hey, wait, you’re wearing your clothes from yesterday? What happened to your pajamas? (angry now) I told you last night that those clothes were dirty and you needed to get into clean nightclothes. Why didn’t you change?!
Sylvia: No! Go away!! No, don’t take my shirt off! I’m clean! I already showered! I’m dressed! Leave me alone! (pushes away her daughter, who is still trying to remove Sylvia’s shirt). NO! NO!!! (flings her arms out in panic, accidentally hits Cynthia in the nose, which starts to bleed) STOP IT!! LET GO!! (both are angry, crying and frightened; it takes 30 minutes to calm things down and stop Cynthia’s nosebleed)
The second scenario demonstrates how to use positive emotions to help Cynthia and Sylvia get through the care task of bathing and dressing.
Cynthia (arrives, smiles and uses relaxed body language): Good morning Mom! Did you sleep well? How are you feeling? Did you notice the rain today? Doesn’t it smell great?! (Cynthia gives mom a one-armed hug, opens the window with her free hand; invites Sylvia to stand at window with her)
Sylvia: I’m good. Rain? (goes to the window with her daughter;, stands close beside Cynthia, leans into her, which Cynthia accepts and returns)
Cynthia: Oh, Mom! Speaking of smells, take a whiff of this yummy bath gel I got today! (produces bottle, opens and sniffs it enthusiastically; offers to Sylvia to sniff) Cucumber! I know how much you love them. Remember that cucumber salad your sister used to make? This smells just like summer at the lake with Aunt Betty, doesn’t it? (laughs and pours a little in Sylvia’s hand) Isn’t that nice? Let’s get a little water, lather it up and really get the smell going. Hey, while we’re at it, let’s freshen you up – you’ll smell like Aunt Betty’s salad! (gets out wash cloth and towel) Now, what was it that she put in that cucumber salad – was it dill or tarragon? I can’t remember…
Sylvia: Oooo, yes, that smells good! Yummy – yes! (rubs the soap with her hands, laughs at memories of Betty and her famous cucumber salad) Cucumber salad! Let’s make some!
In the first example, Cynthia was clearly unhappy the moment she arrived. She did not make any social contact, show positive body language, or create a positive atmosphere in which to introduce bathing and dressing. She criticized her mother, and was angry about things Sylvia might not remember or understand. As a result of her “violence,” Sylvia might now be put on sedating medication, even though the incident was a result of Cynthia’s unschooled approach. For Sylvia, negative emotions would become associated with the morning routine. This could herald the start of a difficult, unhappy day for both of them, as well as more struggles in the future.
In the second example, Cynthia started by nurturing a warm relationship. She showed her mother she was glad to be there, and was supportively concerned for Sylvia’s wellbeing. Cynthia then shared several pleasant sensory experiences and memories with Sylvia before “let’s freshen you up” was even mentioned. Sylvia would come to associate positive emotions with the morning routine. The likelihood of a good day for both women was established.
It is said of caring for dementia patients: “Spend five to save 20” (p. 186). If care partners don’t spend five minutes to make social contact, create enjoyable experiences, and set up positive emotional associations, it can take at least 20 minutes to calm things down – and someone might get hurt in the process. A little time to set the stage first with good emotions can be a fine investment.
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, Massachusetts/New Hampshire Chapter. (August 2, 2011). Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum [Training Course]. (Lawrence, MA)
Bier, D. (2016). Improving Alzheimer’s and Dementia Care: Emotions Rule. Psych Central. Retrieved on February 25, 2017, from https://psychcentral.com/lib/improving-alzheimers-and-dementia-care-emotions-rule/