We often use pejorative words to describe that which we don’t like in others. We label behaviours that challenge us, don’t fit with our agenda, interfere with our routines or are inconvenient to us in some way or another as “bad,” particularly if those behaving in the way we don’t approve live with dementia in institutional environments.
When they “resist care,” “wander,” or “complain” their “bad” behaviours are recorded and tracked in charts by nurses and care staff like so many black marks, which, if and when there are enough of them, may lead to the offender being “punished” by, for example, being physically restrained and/or chemically restrained, which in turn may lead her or him to incur more infractions such as “trying to escape,” or “refusing medication.”
I believe we have to stop this cycle by reframing how we think about the behaviour of people who live with dementia. I’ve already suggested lots of alternatives for wanderer and wandering.
Here are some potential replacements for “refused [antipsychotic] medication,” which I hope medical professionals and long-term care facility staff will take time to think about:
- Respectfully declined
- Wished to remain himself
- Exercised her right to choose
- Preferred to keep her wits about her
- Wanted to be awake instead of sleeping
- Wished to avoid unpleasant side effects
- Preferred to be alert rather than catatonic
- Wanted to engage life and live longer & better
- Refused to put herself at increased risk of falls
- Wanted to have control instead of to be controlled
In case you think I’m being over the top and/or silly about this, please take a moment to reflect on what you would do if someone tried to make you take drugs you didn’t want to take. If you are like 94% of the 1,300+ people who have answered my short survey on behaviour, you would decline to take them. #justsaying
Take my short survey on behaviour here.
Image copyright: lenm / 123RF Stock Photo
My Alzheimer's Story 
Thanks for this Ms Susan.
This is going to require a great deal of REALIGNMENT, RETRAINING and RE-ASSESSMENT of our Medical professionals.
When one spends the time to listen to
our clients /patients express themselves, you will often recognise that it’s not just that they are ‘refusing to comply’ instead they are rejecting the way they are being spoken to and the ‘labels’ that are advertently or inadvertently placed on them.
Based on my in- home experience working with clients diagnosed with dementia, they tend to display a more psychotic behavior while on medication(s) and once this is reduced/discontinued, I have observed a less erratic-type of behavior. This I have attributed to providing personalised care which means taking the time to understand your client’s way of thinking, create situation awareness, understand clients from their cultural /religious background and do not impose your beliefs on them and be mindful of the tone and inflection of your voice when you communicate with your client.
Interact with your clients, spend the time to understand there work style/preferences, their hobbies prior to their loss of Independence and encourage them and make them ‘feel’ human at all times because they often don’t think they are.
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Thanks Amazing Susan,
A sobering article to be sure. In America in general, often the first choice to “treat” a physical or mental problem is a pill. Our family has always shied away from this option whenever possible and instead opted for more simple, somewhat natural remedies (ie baking soda & water for heartburn). I am grateful to have my mom at home and so far, by keeping her engaged, respected and comfortable, I can minimize the angst she may feel.
When someone with memory issues moves into a new home (even a daughter’s), I would think there’s a period of “I am going home!!” I even noticed incontinence the first month with mom more than more recently (and she’s 92) and very mobile. New routines I suppose. Mom doesn’t demand to go home as frequently now that 4 months have passed and it was a HUGE help to learn that “Home” often meant, “I feel out of control!”
In an institution, “clients” don’t have many choices in feeling more in control so if they’re combative, I can understand a “let’s medicate” approach because volatile behavior is disruptive to staff and other residents. Sometimes even offerings that are essential for good health are refused. Mom refuses water when she thinks I’m telling her what to do, so I imagine it’s a difficult situation when the client would possibly be more “at peace” with the right meds. Turnover of staff, personal attention in combination with activities and “eagerness to medicate” will all be considerations for me should mom ever live in a facility. All I can do is educate myself. You’re helping me. Thanks!
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A different approach called energy medicine has been recommended by many researchers. BASED ON THE MOVEMENT IN the brain of our usual amyloid etc that move on the brains electrical current. Something new in research that is going beyond the norm and concentrating on other areas of the body that may be the cause of AD. The current route has been a total failure as the drug the AA has been funding was ruled a failure by the FDA. Refusal of any medicine is a patients right but when their rights are discounted because of cognizance, the next of kin caregiver preference to refuse must be accepted. Nursing homes have not been patient oriented under hospice and palliative programs as the patient must be allowed to live till they die, the original intent of hospice. Other medical practices to sustain life without pain has to be introduced and we must all start thinking more of the patient than available beds. Medicare will not authorize payments for monitoring vital signs but this has to, change.
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Thanks for your comment and insights Norman – interesting and provocative as usual.
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I don’t think anyone in Aged Care Work force disagrees with what we all are saying here. The pure simple facts is we say an document the way we do as its rammed into us on a daily basis to gain funding here in Australia. Our funding is constantly being reviewed an changed. They do random audits an if they don’t see this kind of documentation in progress notes they downgrade our funding or totally take it away for that person for financial year. They gave taken away funding for anyone with dementia where it used to be additional funding to allow for extra staff, got too expensive so removed. You used to get funding to promote an maintain mobility, now you funded if they dependant, funded for incontinant, not maintaining continence. As soon as you make progress in one area, government change the funding. So you can see why providers lose sight of the person an use negative language. It’s all about trying to get funding, most places are in the red. Sad that it’s a problem that won’t go away, everyone loses sight of The Person. I wander around many homes with no outside access, no one is allowed to take risks an live an think l could design such great homes or farm like places an create freedom. We could do so much but we r so worried about being sued if they fall doing something they want to. But no one wants to know. Families are being unrealistic, don’t have any idea of aged care an disease, don’t come to any education, any meetings for residents to change things. Very sad. Goes against everything Alzeimhers is saying about what to do an how to treat the person.
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I hear and understand your frustration Jennifer. And the situation is only going to get worse if we don’t start making big changes RIGHT NOW! Australia isn’t the only country with these problems. It’s the same in Canada, the US and the UK. Giving up is not an option. We must go on advocating.
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