The Horrible Bitch that is Dementia

This entry was originally published on my website, Live Onawa, January 12, 2021.

I’ll begin by sharing a paper I wrote back in 2015 exploring the use of non-pharmacological therapies to engage a person with dementia. Beginning here:
The purpose of this statement is to substantiate my view that simulated social stimulus in the form of a life-like baby doll or stuffed animal helps in engaging a patient with dementia in a nursing home setting to generate warm feelings and reduce agitation. Through this research, I wanted to examine non-pharmacological interventions to deal with dementia patients during aggressive behavioral outburst. Is it really useful in creating a distraction from harmful or threatening situation? It seems to me that the dolls keep the dementia patients distracted more than those who do not have one. Some authors consider doll therapy as controversial due to its ethical nature and consider doll therapy as “infantilizing for patients who end up being treated like children” (Hughes et al., 2006). Perhaps dignity is the issue for some, however, certain things are done for the safety of the patient, and I personally see no reason not to use this method if it is effective. Although, in order to achieve the greatest likelihood of success, it is important for the caregivers to understand the patient’s attachment/relationship with the stimuli, cognitive status, and past history. Meaningful stimuli needs to be considered and explored to maximize the desired benefit for persons with dementia. It is pertinent to conduct more trials with less bias and with larger samples to see the efficacy of such non-pharmacological interventions amidst our dementia population. In my experience, there have been instances in which the doll caused more distress. For example, one patient became distraught because she didn’t know the dolls’ names and felt they had been abandoned. Otherwise, I have seen mostly positive results. Interpretations of doll/stuffed animal therapy enable health care providers to maximize the positive outcome of providing stimulus with greatest likelihood of success (Cohen-Mansfield et al., 2010).I interviewed a Nurse Practitioner (NP) who works in the dementia unit of a Nursing Home (NH) my employer services. She has witnessed positive results in the NH when a doll/stuffed animal has been introduced to geriatric clients. According to her, this sort of stimulus seems to fulfill a sense of purpose, and provided a calming effect while keeping the patient engaged. She emphasized the doll/animal should appear as realistic as possible (S. Hasgrove, personal communication, January 20, 2015). This NP’s experience corroborated with the results of Ellingford et al. (2007) post study analysis that “These authors found an increase in doll users’ positive behavior following the introduction of the dolls and a reduction in negative behaviors and aggression”. Amongst geriatric patients suffering from dementia in nursing home settings, how does simulated social stimulus like doll/stuffed animal compared to no stimulus reduced behavioral disturbance and wandering within three months of exposure to stimulus? In conclusion, this finding is consistent with studies showing that increasing resident engagement through individualized activities is associated with decreased agitation. However, we cannot disregard the severity of dementia that is a significant factor, as severely demented became increasingly disengaged from the stimulus overtime. Future research should focus on the development of targeted individualized interventions based on the cognitive and affective profile of dementia patients with behavior disturbance. Reference List:Cohen-Mansfield, J., Marx, M., Dakheel-Ali, M., Regier, N., Thein, K., & Freedman, L. (2010). Can agitated behavior of nursing home residents with dementia be prevented with the use of standardized stimuli? Journal Of The American Geriatrics Society, 58(8), 1459-1464. doi:10.1111/j.1532-5415.2010.02951.xEllingford L., Mackenzie L., Marsland L. (2007). Using dolls to alter behavior in people with dementia. Retrieved from http://www.nursingtimes.net/nursing-practice/specialisms/mental-health/using-dolls-to-alter-behaviour-in-patients-with-dementia/201683.articleHughes J. C., Louw S. J., Sabat S. R. (2006). Dementia: Mind, Meaning, and the Person. New York: Oxford University Press


Now, I have worked in mental healthcare facilities from Cullman to Decatur to Madison to Huntsville, and have scribed for geriatric providers who see nursing facility residents who suffer from this God awful disease that affects the brain in the literal sense. Because it physically affects the brain by shrinking some areas, depending on which areas are most impacted, the loss of brain tissue negatively impacts the person’s processes of speech, thought, motor abilities, etc. Whether ripping the person from their fond memories, or the sense of who and where they are, their social or communication skills, or their physical capabilities, there are a number of ways that this disease affects the person. If you have never cared for someone with dementia and have no experience witnessing its effects, you would be amazed at the every day tasks we perform effortlessly without realizing how impossible it might be for anyone else. Most of the notes I scribed were vague and consistent, using very average and uninspiring treatments that basically allowed the provider to be on her way. Week after week, I would see either stability or decline, no real progress- nothing to leave me with a satisfactory feeling. This troubled me, especially years later, after having experienced working with dementia patients first hand.
To elaborate, I have also worked as an activities director in a nursing facility that maintains a hall specifically treating men and women who have been diagnosed with various forms of dementia, including a majority who suffered with Alzheimer’s Disease, Parkinson’s Disease, and forms of dementia likely brought on by severe trauma and even heartbreak. For example, a prominent community doctor began showing signs of dementia shortly after his daughter was murdered in cold blood by a stalking ex-boyfriend. This incredibly educated, hardworking and caring man just shut down, and I was able to communicate with him during our time together because I could look him in the eyes and give him encouragement to do a task as simple as removing his shoes, whereas other facility workers often had difficulties and would require an additional worker to assist, using (gentle) force. But I somehow tapped into his emotional distress, found him, and was able to communicate in such a way he would willingly follow my soothing tone, in giving him simple step by step instruction. I was also able to communicate with a woman who was once a successful and independent business owner and prominent community leader (especially in her church family) in a way that was so efficient, other colleagues (including nurses and her therapists) often called me the “Betty-Whisperer”. (Her name is changed for privacy issues.) This woman would fight and scream and act like a completely different person unless I was present. I would use a calm, light tone and was incredibly patient and would use distractions sometimes in order for her to follow instructions in order to get her dressed, fed, or participate, etc.
Both of these superb people whom I love have since passed on, which in a way, I look at as a blessing to their own benefit because there is not one shred of doubt where their souls now reside. But that’s another thought for days that have already passed, too. And I moved on to other things now- although I’ll carry those lessons with me always.
I write this ahead of the real message I want to share to give you an idea of how challenging it is for us- people who do not have this disease- to understand and communicate with people who do. If we just take time and effort to listen, you will be astonished at what you might learn. Now, on to my story about my experience in listening to a particular person who would have lengthy and repetitive conversations, someone who helped me understand an issue that it still prevalent today.
Changing her name to protect her identity, I will use Rose.
Rose was a lively, organized, and educated woman. She kept up with the date, marking her calendar daily, took notes (a bit sloppy and unorganized), could mobilize easily with her walker, and was very well groomed and socially active. She loved participating in all group activities, especially activities outside. She is now 89 years old, and has lived with dementia for a number of years. She holds a Masters Degree in English, was a world traveler, a nationally acclaimed competitive dancer, and worked and retired from the Redstone Arsenal in Huntsville, Alabama. In her time working for the US Government, she wrote pocket manuals, assisted big wigs, watched countless rocket launches, and even laughingly expressed to me that she and other government employees would “take a bus to Nashville to see the Grand Ole Opry every weekend on taxpayer money.” Amazed, but not surprised in the least, would be my reaction (the first, second, and twenty-third times in hearing her story). What was surprising to me, however, is the fact that she is (and often spoke about being) half Cherokee. It isn’t everyday you encounter a half-Cherokee world travelling woman in Alabama at her age who holds a Masters and is retired from a still prominent government facility. But she would, very precisely, detail these concreted stories about her life because it solidified her identity- one of the few things she was able to hold on to. (Imagine losing a husband of forty years, your career, your opportunities to travel, your home, your independence… imagine how sane you would be.)
In almost every verbal encounter we exchanged, she would never fail to mention that her mother was a full blooded Cherokee. She told me this because she sensed I was of a similar heritage and she asked me if I had any Cherokee blood in my family, to which I said yes. She would then talk about her mother, who was an expert seamstress and taught her how to sew. Her mother had two children- Rose and another son, who had “white cotton hair, fair skin, and blue eyes”. I couldn’t help but think- “I wonder what that must have been like, considering she was physically polar opposite and had been uprooted from her way of life to be acclimated to the white society she was forced into.” Nevertheless, Rose always claimed her mother loved life and was just happy to be a part of the society so that her children could get an education and all the benefits that come along with the acclimation.
Still, my heart continues to break- especially now, after all the recent events involving native peoples and their rights, land and culture, etc. It really is a shame that one has to acclimate to another society just to thrive in this life. It is, without a doubt, very unfair. This is what prompted me to share this particular story. I have heard numerous times from Rose that she “just had the best life- there’s not a day I don’t regret”. That makes me happy to hear, especially considering the unfathomable sacrifices her mother- and no doubt her mother’s own family- had to make in order to gain benefits only offered to those who followed suit. It must have been deeply painful for her, which is likely why she was such a dedicated mother and fervently took part in one thing from her heritage that could be carried over into the American pattern- needlework, a pastime that she taught her own flesh and blood.
Rose was subsequently moved to another facility to be closer to family, and I have not seen her in over a year’s time, but I imagine she is still sharing her very important narrative with any one person who is willing to listen. I hope they can take similar lessons away from her just as I have.

If you know or love anyone with dementia, especially if they are still under facility quarantine, please understand their best treatment is your presence of mind in speaking with and listening to them, and that’s if they even have the ability to speak. Otherwise, look into a lifelike baby doll. You’ll be amazed what a little music can do, too.
For more information on the challenges of being indigenous and to learn how you can better support these suffering communities and the independently owned businesses launched by these hardworking people, I encourage you to visit these websites:
littlecheiis.com

onefastbuffalo.com

linktr.ee/nativewomenswilderness

uihi.org

indianlaw.org

culturalsurvival.org

indigenouspeoplesresources.com

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