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The Essential Checklist for Good Dementia Care

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DEMENTIA CARE CHECKLIST
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In my work with persons with dementia, I have found Jane Verity's 5 Universal Emotional Needs to be an essential framework for good care:

People with dementia often express themselves in uncharacteristic ways such as a burst of anger, accusations or repetitive actions. Traditional approaches deal mainly with the symptoms, which results in no profound changes to the underlying cause ... [Instead there needs to be a focus] on everything that happens below the surface for the person with dementia where we find the true reasons behind their behavior -- the five universal emotional needs ... These needs are universal and do not change. What does change is the opportunity to have these needs met -- especially for people with dementia or anyone else living in an institution where the focus is on tasks and routines rather than on the social and emotional wellbeing of the individual.

The five emotional needs that need to be met are:

1. Preserving the person's power to choose:

This is the most important need to pay attention to in my experience. In every single one of our interactions, we need to stop and change our stance from single decider to "partner in care," always involving the person in the decision-making. This continues to apply throughout the course of the dementia, including during the last stages when the person may no longer be able to clearly think, or verbalize, or move.

Then comes the art of how to facilitate the person's decision-making process. One good rule of thumb is to stick to small, in-the-moment decisions, and to limit the number of options being presented. It is also important to use simple, direct communication. Would you like to get up now or stay in bed a bit longer? Do you prefer a shower or a sponge bath? Is the water temperature too cold or just right? Which shirt do you want, the red or the blue one? Do you want the music on or off? This way the person's mind can follow, and this gives the person a greater sense of mastery.

#2. Boosting the person's self-esteem:

This need is foundational for all the others. While we could all use some self-esteem boosters, for the person living with dementia, that need is even more critical. First, the person's internal experience of themselves as someone whose mind can no longer be trusted, sends messages of inadequacy, low self-worth and shame. Second is the accumulation of negative messages from the outer world, either passively or in more active forms. The person who is placed in an environment that no longer matches their abilities, keeps being confronted with the impossible task of managing even the smallest tasks.

Conversely, environments that strip the person from the opportunity to exert their remaining abilities have a similar detrimental effect on self-esteem. Also tragic are messages to the person that he or she "should know better" or is not trying hard enough. There are many ways that we, the ones with still relatively intact memories, contribute to such chipping away in our friends hearts. This video from Jane drives home the message:

3. Maximizing the person's opportunities to be needed and useful:

Stop for a second and list all your favorite roles in life. For me, it is being a psychotherapist, a dementia care coach, a writer, a trusted friend, a mindfulness teacher, a social media consultant; so much of our life is tied up into our roles and the sense of meaning we derive from them.

Next, imagine all that these roles are taken away from you. Now, it is just you -- being and no longer doing. You get to watch others around you still very much involved, bustling, doing, working, being thanked. And you are no longer contributing to this world in the same way, or at least not much. You may be sitting in a wheelchair or lying in bed, and they are walking by or standing over you. How would you feel? I know for myself it would not be very long before I start feeling depressed.

This is why it is so important to pay attention to this other essential emotional need of the person living with dementia. Because the ability to initiate task is compromised, it becomes our responsibility to jump start the process often. And also, to not ignore the person's attempts to still contribute, in whatever small ways that may be. I witnessed a resident in an assisted living community offering one of the aides to carry her dirty dishes to the kitchen. The aide declined. "No, you don't have to. It's my job." While it was well intentioned, the aide ended up depriving the woman of an opportunity to feel useful.

#4. Giving the person a chance to care for others, not just to be cared for:

The need to nurture and care for another being is part of our human makeup, and maybe even more so for women. This is why the care relationship should always be thought of as a mutual interaction, and not a one-way transaction as in caregiving. In care partnering, I get to receive care from you, and I also get to care for you or other people.

Let her act as a mother still, and suggest things to you such as, "You are going to be cold; you should be wearing a sweater." And thank her for her kindness. Let him who can't sleep well at night help you keep an eye on other residents. Receive a smile from the one who can no longer speak soothing words or move to offer a gentle touch. Join the woman who is rocking her "baby" and shower the inanimate doll with all the love you can give with her. Every day, I witness many such acts of random kindness from persons with various forms of dementia. And each time, I am moved by the beauty of the human heart.

#5. Letting the person know how much you love them, and be open to receiving their love:

I used to be shy about letting my mother how much I loved her. No longer. Now, every time I call her, I end with a simple "we love you" and I know those words are made even more potent by my mother's lack of memory. Those words get deposited in her bank of good feelings, and will make up a bit for some of the imperfections of her assisted living situation.

I have also learned to take in my mother's affection, all of it. And I have noticed how much that makes her happy.

These five universal needs are almost as essential as food and water to a person's well-being. Next time you spend time with a person with dementia, try to honor those needs. And when the person becomes agitated or withdrawn, ask yourself if maybe one of those needs did not get met, and how can you correct the situation?