Dementia and pain

Some years ago, a woman asked me to check on her sister in a dementia care facility to evaluate how she was being treated. As I approached her room, I heard a tremendous commotion, and when I walked in I saw three staff members struggling with a woman who surely didn’t weigh more than 120 pounds. All three of them were on top of her, trying to hold her down, and she was struggling and screaming bloody murder! The confusion was amplified by all three of the staff shouting uncoordinated instructions at her.

I said, “What in the world is going on here?” One of the staff looked at me and said, “We are trying to change her brief?” I asked why they were treating her so roughly and making her scream, and the staff member responded, “Oh, that screaming is just the disease process; she doesn’t even know what is happening; she has dementia.“
The belief that people with dementia descend into some kind of vegetative, insentient state where they know and feel little or nothing is a terrible misconception. It is a misconception that leads us into inhumane practices of care, but it also enables us to justify those bad practices by just blaming the disease. In its worst form, this misconception leads some to believe that people with dementia don’t feel pain; not like us “normal” people!

I assure you that people with dementia do feel pain; possibly in ways that are more severe than those of us without dementia. We often assume otherwise because they cannot tell us they are in pain, or where the pain is, or how serious it is. This is because they have lost the ability to communicate; not because they have ceased feeling pain.
Not only do many with dementia lose the ability for complex verbal communication, but they are also robbed of their “body language.” For example, dementia often results in a placid, mask-like facial expression, which means we cannot see pain on their face. Thus, again we may wrongly assume they are without pain.

Consider the fact that most people with dementia are over the age of 65, and many live into their 80s. They have the same pain-causing illnesses and physical changes as anyone else in this age category. Dementia does not make the non-dementia comorbidities go away, and we cannot treat them as if it does.
But I believe there is also a level of emotional or psychic pain from dementia that we too often fail to understand or appreciate. My observation tells me that people with dementia – at any point in their journey—understand or sense that they are not well, that they are not carrying their load, that they cannot do the things they used to do, and that they are isolated and treated differently by friends and loved ones, even when it is not intended.

I think there are two ways we, as care partners, can help our loved ones with dementia deal with both physical and emotional pain. The first is to become more sensitive to its presence and severity by using a handy tool called the PAINAD scale, an observational method specifically designed for people with dementia. Just do an internet search for “PAINAD Scale.” It’s a two-page document that you will find very helpful.

Once you have a better understanding of your loved one’s pain, when it is more prevalent, and what may cause it, begin to apply the techniques of compassionate care that we have discussed so many times before. Love, reassurance, kindness, validation, massage, music therapy.

I believe that through knowledge, observation, and techniques of compassionate care, we can reduce or even eliminate both physical and emotional pain that our loved ones with dementia inevitably experience. By easing their pain, we may ease our own, and we should remember that we both deserve the best!

Until next time remember: “We all deserve the Best”
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