Right or Wrong? 13 Ethical Dilemmas in Alzheimer's and Other Dementias

Weighing out Ethical Dilemmas in Dementia
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Because Alzheimer's and other types of dementia affect the ability of the brain to make decisions and remember information, they often present various ethical dilemmas to family members and caregivers. These include the following:

1. Informing and Explaining the Dementia Diagnosis to the Person

Some research found that more than half of people with dementia are not told of their dementia diagnosis. Physicians may be concerned about the person's reaction and, not wanting to trigger emotional distress in their patient, they may just skip over discussing the diagnosis, or downplay the impact, saying, "You do have a little trouble with your memory." 

While the desire to avoid upsetting the patient and their family is understandable, we don't skip over tell the person with cancer that they have a malignant tumor and that it might not be operable. In dementia, the early stages offer the chance to take care of legal and financial issues for the future, and discuss medical preferences with family.

Suggested reading: 12 Benefits of Early Detection in Dementia

2. Driving Decisions

For many of us, driving is a sure sign of independence. We can get where we need to go, and do this whenever we need or want to. However, in dementia, there comes a time when driving isn't safe any more.

When do you decide it's too dangerous? If you take away that ability and independence, you're taking much away from that person. But, if you hesitate too long and your loved one ends up killing someone because she made a poor choice as she drove, the results are clearly devastating for all involved.

3. Safety in the Home

Your loved one may demand to continue to live at home, but is she still safe to do so? There are several precautions you can take to improve the safety at home, and you can also bring in others to help at home, too.

Perhaps you've decided she's safe if she wears a GPS locator, or if you have a camera in the home.

Or, maybe you use an electronically programmed medication dispenser to help her safely take her medicines.

At what point do you override her desire to live at home in your attempt to protect her?

Suggested reading: Tips to Know When It's Time for Nursing Home Care

4. Enacting the Power of Attorney

Autonomy involves the right to make our own decisions. We all want it, and, in person-centered care, we want to foster and protect this in others, as well. However, as dementia progresses, this ability fades and it becomes time to consider enacting (or activating) the power of attorney. This means that the person's medical decisions are handed over to the person they identified on the power of attorney document. 

Typically, a physician and a psychologist, or two physicians, have to determine that the individual is unable to participate in medical decisions. The timing of this decision, and the line that physicians and psychologists draw, varies from person to person, with some doctors preserving the decision-making right longer than others.

5. Consent for Treatment and Clinical Trials

In the early stages of dementia, your family member can probably understand the risks and benefits of a treatment. But, as his memory and executive functioning declines, this ability blurs. Make sure that he really does understand these issues before he signs a permission form.

6. Hiding Medications in Food

In the middle stages of dementia, it's possible that dementia may cause the person to be resistant to taking medications. Some caregivers have tried to eliminate this battle by disguising pills and hiding them in food. Research suggests that this practice- called "covert administration"- has been fairly common, and some feel that it's necessary for the well-being of the person. Others argue that it is ethically inappropriate because it's "tricking" the person into taking the medicine.

This issue has evolved over the years as medication capsules can be opened and the drug sprinkled into the food or drink of the person with dementia. There are also patches that deliver medicines, and even prescription lotions that are rubbed on the skin. For example, a topical dose of Ativan can be administered by simply rubbing it on the person's neck.

Others argue that if the power of attorney has been activated- which essentially renders the person unable to consent to medications- and the individual appointed as the power of attorney has already consented to the medication use, placing the medication in food can provide an easier way to administrate it.

7. Sexual Activity

The question of when someone is able to consent to sexual activity when they have dementia hit the newsstands in 2015. A man was accused of having sexual activity with his wife, who had Alzheimer's, and eventually he was found not guilty. 

But, this question of consent in dementia remains for many. Merely a diagnosis of dementia does not prevent someone from being able to consent, and many argue that sexual activity is a highly important factor for maintaining quality of life. The challenge comes in knowing how to protect the right to engage in meaningful sexual activity but prevent someone from being taking advantage of by another.

8. Therapeutic Lying

Is lying to your loved one okay when the truth would be distressing to him? There are professionals on both sides of the issue. Generally, it's best to use other techniques like distraction through a subject change or a meaningful activity, or attempt validation therapy. For example, if someone is asking where her mother is (and she passed away many years ago), validation therapy would suggest that you ask her to tell you more about her mother, or ask her what she loved about her.

9. Genetic Testing for Apolipoprotein E (APOE) Gene

Genetic testing can prompt many ethical questions. These include to whom the results will be disclosed, what the next steps should be if you do carry the APOE gene, and how to cope with this information. The results do not necessarily indicate if the person will develop dementia; they simply indicate the presence of the gene which poses an increased risk. Because there are so many ethical considerations about genetic testing, and the results do not directly link to outcome, the Alzheimer's Association does not recommend genetic testing for the APOE gene on a regular basis at this time.

10. Blood Tests that Predict the Development of Alzheimer's

There are blood tests being developed and researched that have been reported to be potentially very accurate in predicting- years in advance- who will or won't develop dementia. Similar to the APOE gene testing, these tests pose questions about what to do with that information.

11. Administering Antipsychotic Medications

Antipsychotic medications, when used as approved by the Federal Drug Administration, can effectively treat psychosis, paranoia and hallucinations, thus reducing the person's emotional distress and potential for self-harm. When used in dementia, these medications can occasionally be helpful to reduce paranoia and hallucinations. However, they also pose an increased risk of negative side effects- even including death-- when used in dementia. The use of antipsychotics should never be the first option when determining how to better respond to, and reduce, the challenging behaviors in dementia.

12. Stopping Dementia Medications

Dementia medications are prescribed with the hope of slowing down the progression of the disease. Effectiveness varies, with some experiencing a noticeable change when these medicines are started, while it's difficult to see any impact in others. The question of how much this type of medicine helps, and when it should be stopped, is difficult to answer because no one knows if the person with dementia might be far worse off without the medicine, or not. If it's discontinued, the fear is that the person could decline suddenly and significantly. Others ask if they are just paying money needlessly to drug companies, given that there is typically a limited time frame for drug effectiveness.

13. End of Life Decisions

As persons with dementia near the end of their life, there are several decisions their loved ones need to make. Some have been very clear about their preferences long before they developed dementia, and this can significantly ease the process. Others, however, have not indicated what they do or don't want in terms of medical treatment, and this leaves the decision-makers guessing what they think the person would want. End of life decisions include options like full-code (do CPR and place on ventilator) vs. Do Not Resuscitate, feeding tube wishes and IVs for hydration or for antibiotics.

Sources:
Alzheimer's Association. Ethical and Care Issues. Accessed January 22, 2016. http://www.alz.org/care/alzheimers-dementia-ethical-issues.asp

Alzheimer's Association. Genetic Testing. Accessed January 23, 2016. http://www.alz.org/documents_custom/statements/Genetic_Testing.pdf

American Journal of Geriatric Pharmacotherapy. 2010 Apr;8(2):98-114. Alternative formulations, delivery methods, and administration options for psychotropic medications in elderly patients with behavioral and psychological symptoms of dementia. http://www.ncbi.nlm.nih.gov/pubmed/20439060

Expert Review of Neurotherapeutics. 2012 May;12(5):557-67. Ethical issues in Alzheimer's disease: an overview. http://www.ncbi.nlm.nih.gov/pubmed/22550984

Journal of Psychiatric Mental Health Nursing. 2010 Nov;17(9):761-8. Covert administration of medication to older adults: a review of the literature and published studies. http://www.ncbi.nlm.nih.gov/pubmed/21040220

Meeting of the Minds Dementia Conference 2012. Alzheimer’s Association/Mayo Clinic. Legal and Ethical Issues in Dementia. Marson, D. March 17, 2012. http://preview.alz.org/_cms/mnnd-handouts/downloads/202-LegalAndEthicalIssues-Part1.pdf

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