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Section 4
Enhancing Quality of Life for People
with AIDS Dementia Complex and their Caregivers

Question 4 | Test | Table of Contents

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In the last section, we discussed coping with depression.  We examined several responses to possible obstacles and five techniques for controlling negative thoughts.  The five techniques we discussed are thought stopping, arranging a time and place for negative thoughts, distraction, arguing against negative thoughts, and problem solving. 

In this section... we will discuss AIDS dementia Complex.  We’ll examine four steps for caregivers providing care to a relative or friend who has AIDS dementia Complex.  These four steps are providing a calm, stable environment, helping to cope with a failing memory, maintaining a safe environment, and setting up advance directives.  As you listen to this section, consider your HIV positive client, whether or not he or she has AIDS dementia Complex.  If other complications exist, is this information still applicable? 

Jeremy, age 37, was married to Ruby, age 34.  Both Jeremy and Ruby had contracted the HIV virus from intravenous drug use.  However, Ruby’s HIV was a different strain which seemed to progress faster and respond less to treatment.  The result was the earlier onset of complications which led to Jeremy assuming the role of caregiver.  One of the complications Ruby experienced was AIDS dementia Complex.  Jeremy was surprised by the diagnosis because he was not familiar with AIDS dementia Complex. 

As he educated himself, however, he grew to accept his wife’s problem.  Jeremy stated, "I guess it does make sense.  Ruby had been acting strange and having trouble remembering certain things.  Hell, sometimes she seems downright panic-stricken.  It’s scary.  But the doctor gave her some medicine that he says might help stabilize her moods and behavior.  I’m still worried, though, and I don’t know what to do."  How would you have responded to Jeremy?

4 Steps for Caregivers of Relatives or Friends with AIDS dementia Complex

♦ Step #1 - Providing a Calm, Stable Home Environment
I stated, "First, let’s discuss providing a calm, stable home environment." 

1. The first point I made regarding providing a stable environment was for Jeremy to avoid confronting bizarre behavior in order to change it.  I stated to Jeremy, "If Ruby begins to show strange behavior or thought patterns, do not argue about them.  Instead, try to understand that those thoughts and behaviors are connected with the illness."  Jeremy asked, "Well, how do I do that?"  How would you have responded?  I continued, "Stay calm, and gently help Ruby understand what is real and what is not."  Jeremy summarized when he stated, "So if I argue or confront the behavior, I just feed into it.  I need to just assure her that everything’s OK."  I stated, "Right.  And redirect her thinking to something more soothing. 

2. Next, keep the home as free of noise and agitation as possible.  Noise, arguments, or even loud talking can increase Ruby’s agitation and irritability. 

3. Third, you’ll want to go ahead and establish a daily routine of activities and stick to it.  A fixed schedule can help keep Ruby feeling stable. 

4. Finally, make sure you let Ruby still be Ruby.  She’ll be aware of the changes in herself." 

Jeremy stated, "Sometimes she says she feels out of control." I continued, "Exactly.  Encouraging her to make decisions about her care will help her regain some sense of control."  Think of your Ruby.  Could these guidelines for providing a calm, stable home environment help your client maintain a sense of control?

♦ Step #2 - Helping to Cope With a Failing Memory
The second step I discussed with Jeremy regarding his role as Ruby’s caregiver was helping care with a failing memory. 

1. I stated, "First, try to keep things that Ruby uses frequently in the same place.  This will make them easier to find and help eliminate some frustration.

2. Second, use datebooks and calendars to review important dates with Ruby.  You might find that by daily reviewing dates with her, she can more easily remember what day it is.  However, casual reminders about the date, time, and people’s names may also help to orient Ruby."  Jeremy stated, "So I need to keep her caught up on all the things around her, like current events?"  I continued, "That can help, as well.  Also, encourage Ruby to make lists of things to do or remember.  ‘To do’ lists can be put in highly visual places, such as the bathroom mirror, refrigerator door, or the TV.  Monitor Ruby’s activities and gently remind her how to do a certain task if you notice that she is struggling.  If you anticipate that she may struggle with an activity, give those reminders ahead of time."  Jeremy stated, "There’s a lot to do.  It’s almost like taking care of a child." 

How do Jeremy’s feelings compare with those of your HIV positive client’s caregiver’s feelings regarding AIDS dementia Complex?  How do you respond to such feelings?  I stated to Jeremy, "It is not unusual for a person with memory problems to lie or make up stories to cover up memory loss.  For example, Ruby might claim to have fed the dog rather than admit to not remembering.  However, when a pattern of lying is discovered, it can lead to arguments, frustration, and embarrassment.  Help the person you are caring for to feel that it is acceptable to admit that his or her memory is poor.  And finally, encourage stimulating activities.  With Alzheimer’s patients, there is a common saying that if you don’t use it, you lose it.  The same may be true for Ruby.  Consider encouraging her to read, listen to the radio, watch television, or talk with friends.  Avoiding boredom and inactivity can help to avoid further rapid decline in memory."  Think of your Ruby.  Could these steps for helping to cope with a failing memory help your client?  How would you introduce them to your client’s caregiver?

♦ Step #3 -  Maintaining a Safe Environment
In addition to providing a calm, stable home environment and helping to cope with a failing memory, the third step in providing care to a relative or friend who has AIDS dementia Complex is maintaining a safe environment.  Jeremy stated, "Safety has really been on my mind.  I’ve been thinking about ways to make things around the house safer for Ruby."  One way Jeremy made his house safer was by taking measures to prevent falls. 

Jeremy stated, "Sometimes Ruby stumbles, so I make sure there’s nothing blocking the walking areas."  I asked Jeremy if he had considered a walker or a cane.  Jeremy stated, "No.  I don’t think she needs one, but if it gets much worse she might."  Ruby was a smoker, so Jeremy addressed that issue as well.  Jeremy stated, "Sometimes Ruby seems sort of jerky or uncoordinated, so I set up an area in the sunroom where she can smoke.  There’s really nothing that catch fire, and I keep the only ashtray in the house there." 

Jeremy also considered assisting Ruby with daily activities that posed a risk due to her lack of coordination.  These activities included cooking and bathing.  Finally, Jeremy supervised Ruby’s use of medicines.  He stated, "She doesn’t remember when to take her medicine sometimes, so I make sure I give it to her at the right times.  Also, Ruby can’t always remember how much to take, so I have to give her the right amounts."  Think of your Ruby.  Could some of Jeremy’s methods for maintaining a safe environment benefit your client?

♦ Step #4 - Advance Directives
Fourth, let’s briefly discuss advance directives.  Clearly, a client with AIDS dementia Complex may not be able to make decisions near the end of his or her life.  Therefore, I discussed setting up an advance directive before Ruby’s ADC became severe.  Jeremy was unclear as to what an advance directive was. 

I stated, "An advance directive is like a living will for medical purposes.  The advance directive states the person’s wishes regarding medical treatment and defines who can make decisions about medical matters in the event the person with HIV cannot make those decisions."  Jeremy asked, "Where do I get an advance directive?"  I responded, "Ask a nurse or doctor about getting the paperwork to complete an advance directive form." 

Clearly, not all caregivers will want the responsibility of having health care power of attorney.  Is your Jeremy unsure about advance directives?  What information are you prepared to provide?

Would playing this section be beneficial to the caregiver of your HIV positive client?

In this section... we discussed AIDS dementia Complex.  We examined four steps for caregivers providing care to a relative or friend who has AIDS dementia Complex.  These four steps are providing a calm, stable environment, helping to cope with a failing memory, maintaining a safe environment, and setting up advance directives. 

Peer-Reviewed Journal Article References:
Breslow, A. S., & Brewster, M. E. (2020). HIV is not a crime: Exploring dual roles of criminalization and discrimination in HIV/AIDS minority stress. Stigma and Health, 5(1), 83–93.

Greenwood, D. U. (1991). Neuropsychological aspects of AIDS Dementia Complex: What clinicians need to know. Professional Psychology: Research and Practice, 22(5), 407–409.

Hart, R. P., Wade, J. B., & Klinger, R. L. (1988). Subcortical-type dysfunction in a case of AIDS-related Complex (ARC). Neuropsychology, 2(2), 73–76. 

Morrow, S. L., Allen, S. C., & Campbell, B. W. (1997). Dancing in the sky: Enhancing quality of life for people with AIDS-related dementia and their caregivers. Psychotherapy: Theory, Research, Practice, Training, 34(3), 324–332.

Sadek, J. R., Johnson, S. A., White, D. A., Salmon, D. P., Taylor, K. I., DeLaPena, J. H., Paulsen, J. S., Heaton, R. K., Grant, I., & The San Diego HIV Neurobehavioral Research Center Group. (2004). Retrograde Amnesia in Dementia: Comparison of HIV-Associated Dementia, Alzheimer's Disease, and Huntington's Disease. Neuropsychology, 18(4), 692–699.

What are four steps caregivers providing care to a relative or friend who has AIDS dementia Complex can take to help the HIV positive client?
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Section 5
Table of Contents