Case Study: Abuse in an assisted living facility

My client Barbara is a resident in a long-term-care facility and I am her state appointed legal guardian. She has been diagnosed with Lewy-body dementia(1) and is non-communicative, but I have little information about her history. Recently, her behavior during toileting has changed and she reacted violently to my assistance. When I pressed her for information, she said that her caregiver and other staff are “not safe” and are “bad people”. She was quite terrified at this time and I am concerned for her situation.

Touch is a vital communication tool for the se with dementia who cannot speak very well.much.

My role in this situation is as her legal guardian, appointed by the state. In the state of Oregon, that makes me a mandatory reporter (2) and so my very first step would be to ensure Barbara's safety in this potentially abusive situation. As her legal guardian, I have the power to change her situation drastically if I decide it is the best option. This means I need to be particularly careful to be diligently aware of what needs to happen versus what I feel should happen.

I will be acting as a professional advocate from an external perspective. I am her legal guardian and it is my duty to ensure that her situation is safe and healthy and that she is well taken care of, as she deserves. I feel like I am an appropriate advocate for this situation, because I have access to a legal system that will be there for Barbara should she need legal help with possible abuse, whether it be physical or financial. Barbara has little history and is largely non-communicative, this makes her an easy target to exploit. The need for her to have a legal guardian makes her essentially a ward of the state and while she has the money to pay for her own care, she is still part of a group that is disproportionately abused simply due to a lack of diligent advocacy.

Depression and abuse go hand in hand.

My recommendation is to immediately report the interaction to my state's local long-term-care ombudsman(3) to conduct an investigation.

I would not report the situation to the facility manager until after I speak with the ombudsman, as they may feel it's best to withhold the knowledge of the investigation until after contact has been established between the ombudsman the the facility. This is to guarantee there will not be retribution towards Barbara, if in fact the allegations are founded and there is a cultural acceptance of abuse within the organization. Of course we don't want to automatically assume that her behavior is a result of abuse from care staff, but periodic audits for quality in nursing homes need to be occurring in all care facilities; this audit will be inevitable, though urgent.

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Abuse or dementia?

I look at this case with the perspective of the cultural dynamics theory. In the case of abuse in residential homes, abuse tends to compound and staff are often aware of each other's behavior. There are many reasons why it would be in an organization's social culture to overlook and accept abuse.

For instance, time pressure causes a high level of stress at an individual as well as environmental level. For this reason, it might be easy to dehumanize and become easily frustrated with older adults and snapping at the residents may be an accepted part of the culture. Another not-uncommon possibility of this idea is that of ignoring residents. Neglect is abusive and may be easily accepted by a tired caregiver, and rationalized.

In this case, Barbara has been having increasing issues with incontinence. This can compound onto her other factors by increasing time stress in between toileting, she could even be being ignored when she requests toilet assistance. It could be increasing stress among staff to be cleaning up accidents more often, again taking up valuable time.

Stress can cause a tired, overworked caregiver to unintentionally abuse a vulnerable older person.

There also may be a cultural standard of low accountability. Perhaps in this facility they are not required to report small interactions, such as distress during a toileting. They brush it off when clients needs go unmet because they are busy or tired, who can remember to write down everything that happened in between every room?

As with any case, I would be careful not to make hasty conclusions based on the small amount of information I was presented. I would begin my assessment plan with the 5 W's. My first task is to determine why there is a need for an assessment. In this case, my client Barbara has had a recent change in behavior and now responds fearfully and violently to toileting assistance. In a recent visit, she told me that her caregivers were “bad people” and I need to investigate why she would say this.

There are several factors to consider in this change of behavior. There is the obvious implication that her care staff has been abusing her, and I have decided to move first by reporting this information to the state long-term-care ombudsman and DHS. Outside of the abuse possibility, Barbara could be changing behavior due to a decline in her cognitive functioning. Her diagnosis of Lewy-body dementia means that her dementia may be increasing and causing any number of symptoms, including visual and auditory hallucinations.

It is possible that she had a hallucinatory episode during a recent toileting and has now associated the fear with every toileting. This could explain why she claims that her entire care staff are “bad”, as it does really seem unlikely to me that everyone has been abusing her during toileting. To solve this mystery, I will rely on the testimony of the other residents. With the ombudsman, I will interview as many people living in this facility as I can, privately in their rooms.

I can see how she would feel as if everyone were abusive though if there was a culture of compliance with abuse. From the perspective of the abused, it could seem as if they are all working against her to perpetuate abuse and if that were true, she wouldn't be wrong. However, her dementia diagnosis means that we need to assess her mental and cognitive state to determine a better treatment plan for her dementia, as well as thoroughly assess the caregivers and the facility in which she resides.

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How can we help her?

When considering what to assess, I would address all of the pillars of well-being (Physical, mental, environmental, financial, social, spiritual). There are no relatives or friends, not much of a history, and no real indication of Barbara's wants. Legally, I am her guardian and seemingly only advocate. She will need help with court documents if there is going to be an investigation past the initial audit of the facility. I would help her find a public attorney, I would reach out to the Aging and Disability Resources of Oregon(4) to make that happen.

I would need to assess her care staff as well as Barbara herself, mentally. I would begin the process right away and follow up with Barbara personally at our next visit but follow up formally with the ombudsman as often as they deemed appropriate. The ombudsman should do the assessment of the organization and her doctor will assess her medically. I would asses her social, legal and financial situation and perhaps find her a lawyer to secure her finances and possibly pursue legal action against abuse.

Financially, Barbara seems to be untroubled but I would want to ensure that she has a safe place to store her pension and that no-one but her or her guardians have access to it. Older adults can want to remain independent and keep their financial documents handy but those need to be kept in a safe place that everyday care staff doesn't have access to, such as a lock box, and I would check to make sure her pension papers and bank account info are secured.

I would need to advocate for Barbara's health, it seems that dementia symptoms may be increasing and that would need to be assessed by the primary care doctor. I would also request that, as long as it didn't cause Barbara distress, her doctor examine her for signs of sexual abuse. If there were an abuse culture in her environment, they would not likely report on each other if they found physical signs during diapering. Incontinence can be cause by sexual trauma and I would advocate for that, to protect her and other residents.

I don't see any complaints from Barbara previously about her foster care situation, but I also don't see anything to indicate that she has a social network. In under-regulated care facilities such as adult foster homes, they are subject to an annual inspection(5). There aren't any requirements as to what type of social interactions need to be provided for the older adults to enjoy, they can be sat in front of a TV or even less all day if they are compliant enough residents. I would check on her daily routine and see if there is anything that we need to address to provide Barbara with an interesting life.

Her living environment can easily be investigated as I already visit her several times a week, but I could also look into their history and see if any complaints have ever been filed. I would start by checking the DHS public records of adult foster homes. Then, the OregonLive long term care complaint database (6), then the long term care scorecard (7) for any other consumer reports. If I did find something, it would serve as precedent for a legal case if there were actual abuse findings.

Trusting caregivers are key to effective care for those living with dementia.

I don't know much about Barbara, but I can tell from our interactions that she is a beautiful soul. I know that her time here is valuable and when I spend time with her I am reminded of my own humanity and am humbled. To care for Barbara spiritually, I would play her music, using our time together to try to find out what she likes, and be fully present with her during our time together. It can be easy to let life rush you along on your various chores, but we can't forget that people aren't chores, we are all valuable and will continue to be so when we are old.

Citations

1. “Lewy body dementia.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 9 Aug. 2017, www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025.

2. “Abuse.” State of Oregon: Abuse - Mandatory Reporting, www.oregon.gov/DHS/abuse/Pages/mandatory_report.aspx.

3. “State of Oregon: Long-Term Care Ombudsman.” Www.Oregon.gov, www.oregon.gov/ltco/pages/index.aspx.

4. “Explore your options.” ADRC -- Aging and Disability Resource Connection of Oregon, adrcoforegon.org/consite/index.php.

5. DHS – Adult Foster Home Handbook

6. http://www.dhs.state.or.us/policy/spd/rules/411_050.pdf

7. “Oregon senior care complaints.” The Oregonian - OregonLive.Com, projects.oregonlive.com/long-term-care/facilities/.

8. “Long-Term Services & Supports State Scorecard.” 2017 Scorecard, www.longtermscorecard.org/2017-scorecard.