I’m preparing a short talk about dementia for therapists next month and went looking for some graphics. I almost choked when I read one sweet looking thing about what dementia caregivers need to know about dementia. The first thoughts were reasonable:
- Don’t argue with someone who has dementia
- Be patient
- Watch your frustration level
Then this one came up:
- You can still bring them flowers to remember special times. They can still smell the flowers.
And here is where I get all kinds of unhappy. I know it’s a cute phrase. I know we are prone to saying you can still smell the flowers to those having a bad day. The reality is that the sense of smell, and taste, is one of the very first losses in dementia. Someone with dementia literally cannot smell the flowers.
Dementia is the fastest growing health crisis of this century. It is, at this point, unstoppable. It is frequently misdiagnosed by physicians who are not trained well enough to tease out what they are seeing and to refer on to a highly skilled neurologist. People who suspect that they may have dementia coming on will do nearly anything to deny it and to cover it- because they are afraid. And to add to that, dementia causes anxiety and depression with the neurochemical changes in the brain itself. It’s the perfect storm for missing a huge and life changing medical issue.
I am still astonished when I run into people who know nothing about dementia. Young people frequently ask what it is when I say I work with dementia families. They know they have heard of it- but not what it means. The Purple Cities commission in my city is doing education for restaurants so their staff can be better equipped to serve those families. We must begin with explaining what dementia does.
And then we have memes online saying things like folks with dementia can still smell the flowers. It makes me have a big sigh (which is better than saying the things that first pop into my head).
What we need to know about dementia when working with clients and families is:
- The initial symptoms
- How to differentiate between dementia and depression, “malingering” (I really do not like that term), bipolar disorder (late onset? Where is that in the DSM?), and anxiety.
- What questions to ask, and how to ask them in a non-judgmental way to encourage a truthful self-assessment by the client about what they are experiencing.
- Who the neurologists are in your community who know dementia, will listen to families, and will take information from a therapist to do a complete assessment?
- How to assist clients and families in documenting what they are seeing and experiencing so the neurologist gets a complete picture
- What the dementias are and what they include- and understanding that it is NOT confined to seniors, and that mixed dementias are the most common.
- And knowing that no, a person with dementia cannot smell the flowers. They want to eat sweets. They sundown. They can appear perfectly normal for short time spans (as in your office, for instance). They are easily tired and do seem to want to sleep. They do withdraw- but because of the symptoms. They can fake a MMSE for a time. They don’t want to have dementia.
- We need to understand that dementia is a terminal illness, and there are multiple losses involved, much stress, and it must be addressed because there is stuff that must be done before it is too late.
Dementia can and does lead to suicide as well. If you talk to a caregiving child watching their parent facing this disease, they will almost always tell you they will not “do this” to their kids- they would prefer an early death on their terms. In this suicide awareness month, let’s all be vigilant about the possibility of dementia walking in through our doors, and providing the support needed by those with it and impacted by it. And let’s ensure we have the education necessary to be capable of meeting those needs.