This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.
Or if you would like to read our story from the beginning, you can start with: How We Got Here…
This week we want to start a conversation about a problem that is all-too-common in folks that are suffering from any of the myriad of diseases that produce dementia. In addition, some conditions (such as Huntington’s Disease) produce this problem – not as a side effect, but as a primary symptom. The problem is, of course, anger and aggression.
On the support forums, these symptoms are depressingly common. It matters little what the underlying condition might be, violent behavior is not rare. Moreover, the family caregivers get stuck dealing with it because the professionals (nursing homes, memory care facilities, etc.) simply refuse to become involved. I have been told by nursing home administrators that they don’t accept Huntington’s patients because they are, “…too violent.”
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My first encounter with the degree to which the professionals abandon people with anger issues to the amateurs at home, was with my mother who was suffering from dementia as the result of two strokes. She was nearly evicted from a local nursing home for being too aggressive verbally. Really? She was an 84-year-old woman who couldn’t get out of bed by herself, and your staff was concerned for their welfare? Give me a break.
Still, it is an issue that is out there, so I decided to look into it and found an amazing amount of potentially useful information. In fact, there was so much good information that rather than trim it down and possibly leave out something important, I decided to cover it in two parts. This post discusses aggression, some of the non-obvious concerns, and how common it actually is. Next week we’ll talk about causes and coping techniques.
Please note that while some of the following sources are HD-specific, similar research exists for all sources of degenerative dementia. In any case, the basic principles are the same.
For me, my research started with a paper by C.A. Fisher, et al, Aggression in Huntington’s Disease: A Systematic Review of Rates of Aggression and Treatment Methods. Published in the January 2014 issue of the Journal of Huntington’s Disease, this article summarized the contents of 23 research papers, published around the world, and came up with some stark results. For example, it concluded that:
“Aggression is one of the primary causes of hospitalization in this population, is associated with higher rates of nursing home placement, and places family members, carers and other clients at risk of assault.”
So how common is it exactly? In the research that study reviewed, the incidence of aggression ranged between 22% and 65%. In order to explain this wide range, the authors made an interesting observation: studies involving patients that had only recently been diagnosed tended to have the lower numbers while the high end of the range came from patient populations that had been diagnosed 10 years or more previous – or to put it another way, the longer the patient survives, the greater the chance that they will exhibit significant aggression.
By the way, this observation correlates nicely with one generic dementia study I found that pegged the incidence of aggression in the end stages of the underlying disease at greater than 80%.
So when we’re considering aggression, what behaviors are we talking about exactly? Everything from angry words, to temper tantrums, to physical assaults. The research paper I referenced earlier uses this definition:
“…any behavior that attempts to inflict uninvited force, harm, or damage to a person or inanimate object, or verbal behavior that is delivered in an intimidating manner (swearing, yelling, shouting, insults or threats).”
I’m glad to see that they included “inanimate object” in their definition. Why? Well, my late wife Janet and I used to have an album of wedding pictures – but no more.
In the HD world, a number of tools exist to help doctors and other professionals in identifying aggression in a clinical environment. Two of the most common are the:
- Unified Huntington’s Disease Rating Scale (UHDRS)
- The Problem Behavior Assessment for Huntington’s Disease (PBA-HD)
But clear winner of the prize for cool and suggestive acronym is:
- Rating scale for AGgressive behavior in the Elderly (RAGE)
Over the years, Janet participated in several such evaluations. A big problem with these tools, however, is that they were typically administered while both of us were present. Consequently, there were times when I was left with the choice to either:
- Tell the truth and deal with 45 minutes of yelling on the ride home.
- Lie like a rug.
In the end, I did a bit of both. It would be nice if doctors, and especially medical students doing a neurology rotation, understood that asking a question like, “Has your spouse ever been physically violent?” while the spouse is sitting there is not a good thing…
Of course when Janet was going through her violent phase, I didn’t need forms and scorecards to understand that there was a problem. All I had to do was count the bruises and scratches on my body. This is from when she grabbed my right arm with her nails. You can clearly see the marks from 3 or 4 fingers and her thumb.
So if you are just starting out on your caregiving journey, or even if you’ve been on this path for a while, how do you even begin managing this kind of risk?
As with most things in life, forewarned is forearmed. The first thing, therefore, is to make sure that you are squared away between the ears by setting your expectations appropriately. To be clear, our goal is to prepare for the worst case scenario, but pray for the best case scenario (in which many of the preparations we make will never be needed). If this sounds like we are getting ready to go to war, well guess what… we pretty much are.
One of the blessings – and one of the dangers – is that the aggression doesn’t start all at once. Like that proverbial story about the frog in a pot of water, the “heat” sneaks up on you. They don’t just wake up one morning as a violent tyrant. Or if they do, it probably isn’t due to dementia, and is therefore treatable.
In contrast, dementia-related aggression starts slowly, with an illogical argument that isn’t particularly intense, and proceeds step by step from there. This progression means you have time to adjust and learn. But it also means that you can miss what is happening.
Perhaps this slow change is why our families can be among the last people to recognize that a problem exists. Sometimes it’s a matter of people having trouble letting go of remembered images of the past, and understanding the gravity of the situation. For example, it can be hard to get your head wrapped around the idea that “the sweet little boy” who used to sit on your lap and play, is slapping his mother around or threatening her with knives.
To be honest though, other times it’s a matter of willful ignorance. To avoid having to face either the unpleasant truth that a disease can be this horrific, or their own responsibility to take action, family members will sometimes jump to the conclusion that you must obviously be doing something to “provoke” the person. To make matters worse, even you can fall into the trap of thinking that everything must be at least partially your fault, because, you reason, nobody in their right mind would act like that unless they were being provoked. But therein lies the rub: they aren’t in their right mind.
Please be clear on this point: Nobody is perfect. So as a caregiver, you will make mistakes – I personally have made some doozies. The thing to remember is that saying you are never at fault, is as wrong as saying that you are always at fault. Falling into the trap of either extreme has dire effects on both your health and the quality of care you can provide your loved one.
Sounds easy to say, doesn’t it? The normal human condition is to be sucked into one of the extremes like an errant planet losing its identity in the gravitational abyss of a black hole. Although the emotional “black holes” that threaten us are metaphorical rather than astronomical, they aren’t any less real. In fact, in terms of our immediate experience, they are far more “real” than some anomaly of physics light years away.
So next week we will get into the immediate causes of the aggression, and how to deal with them. For now, avoid the traps by remembering that the truth in this case lies not in either/or (good vs bad) but in the realm of both/and: I am not as good as I should be, but I’m also not as bad as I could be. We are all – caregivers and care receivers alike – works in progress and so are all (in the words of the song) “Stumbling To Bethlehem”.
In Christ, Amen ☩
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A prayer for when you are just stumbling along…
“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your grace and love. But today I want to bless You especially for knowing me even when I’m not sure that I know myself. Thank You for not giving up on me. Thank You for keeping my feet on the path, even when the way is dark, and I can’t feel Your hand. Amen.”
3 Replies to “Anger and Aggression in Dementia,
How Common is it?”
I have dealt with violent/ aggressive behavior 13 years ago with my mom having severe dementia and now my husband has LBD early stage no violence as yet but scary although I know it could occur.
Need to remember God is by my side thru this although being human and going thru this second time as caregiver at now age 70 is frightening regardless.
Thank you so much for sharing this! I needed this.
I too have been a caregiver to more than one loved one who manifested irrational anger and verbal aggression. Both now reside in Heaven with their Lord and Savior. I too can testify to the challenges that come with extremely difficult behaviors of HD. I am thankful that I was so frequently reminded by professionals and others in the HD community that what was exhibited by my loved one(s) was not who they really were and to be forgiving, patient and NOT personalize it. That of course can be extremely challenging at times. But I can live with myself in the fact that (by God’s grace) I did my best and made every effort to demonstrate unconditional love to them.
The thing I was always challenged with was people telling me I “needed to set boundaries and not allow certain behaviors.” I did try that approach early on, but to this day I question if one can truly set boundaries with an unhealthy HD mind …. To me, I needed to adjust MY thinking if I was to care for my loved one. Although I wasn’t perfect, I can now live knowing I demonstrated an unconditional love and “hung in there” during the worst of times. They KNEW I loved them and did everything I could for them. “Kick him out”, “you shouldn’t have to put up with that”, etc. just didn’t register with me…. my heart broke for my sick loved ones who didn’t truly understand what they were doing/saying. (Some of those well-meaning people were family members who should have understood the difficulties of HD.)
I would be interested in knowing if there are caregivers who DO exercise “tough love” and the heavy boundaries approach with their HD loved one and found it successful.
In spite of the fact that one of my loved ones took his life, God has given me an incredible peace that I stood with and cared for my loved ones even during the worst of times.