by Jaron L Winston, MD and Cherie Simpson, PhD, APRN, CNS-BC
(This article was originally produced for an Alzheimer’s newsletter.)
The Stress of Caregiving
Caregiving for someone with Alzheimer’s or other dementing illness is a stressful role. Many factors make up the stress of caregiving and one of those is decision making. Decision making is the day-to-day decisions such as whether this is a good day for an outing to the grocery store and major decisions like when is it time for the person with memory problems to stop driving.
Some decisions may seem obvious to you the primary caregiver but that does not mean they are easy to make. What if the person with Alzheimer’s disagrees? What if other family members are not in agreement? These conditions add stress to the decision-making process and therefore stress to the caregiver. This article will discuss some of the issues around “surrogate decision-making” when you the caregiver have to make decisions for the person with Alzheimer’s and will also make suggestions to decrease the stress of decision making.
Alzheimer’s and Decision Making
Alzheimer’s dementia is a progressive disease that affects more than memory. As the disease progresses the person with Alzheimer’s will have difficulties with the thought processes involving judgment and reasoning. Using driving as an example, the person with Alzheimer’s may see himself or herself as OK because they are able to drive the car. Yet, they are unable to realize their limitations and the risks they take because of poor memory and poor concentration. They may dismiss the times they have gotten lost, run a stop sign, or had minor accidents.
In medical decisions, a person with mild Alzheimer’s may be able to recognize a choice between two treatments but not have the judgment and insight to understand the choices, appreciate the personal consequences of a treatment choice, or the reasoning behind the choices.1 When judgment, reasoning, and insight are challenged it is appropriate for a primary caregiver to make decisions. Safety and good care may have to come before the happiness of the person with Alzheimer’s.
Substitute Judgment and Best Interest Decisions
There are two strategies for making surrogate decisions. The first strategy is “substituted judgment” where the caregiver makes the same decision the person with Alzheimer’s would have made if they were capable. The second strategy is “best interest” or making a decision on what the caregiver feels is in the best interest of the person with Alzheimer’s.
Making a decision on substitute judgment means the caregiver knows the values, beliefs, and wishes of the person with Alzheimer’s. Caregivers may not be able to use this type of decision-making if conversations about important topics such as medical care, living arrangements, and end-of-life care are not discussed before the disease makes it impossible.
Caregivers have reported that they have waited too long or felt uncomfortable about bringing up certain topics. Sometimes the person with Alzheimer’s has been in denial and wouldn’t discuss topics, or it just wasn’t in their personality to have intimate conversations.2 These are barriers to knowing exactly what the person with Alzheimer’s would want. This often happens in a situation where an adult child is caring for a parent or other relative.
Making a decision based on the best interest of the person with Alzheimer’s is used when the caregiver doesn’t know the person’s wishes. A caregiver may base their decision on what is in the best interest of the patient instead of what the person with Alzheimer’s previous wishes were based on their current abilities. What was reasonable in the early stages of the disease (following instructions for intensive rehabilitation after surgery for example) may not be realistic now. Quality of life for their loved one guides making decisions with a best interest strategy.
Decision Making With The Family
Family consensus is another consideration during decision-making. In general, caregivers want the family to be in agreement about major decisions. Getting to consensus can be difficult when the family has had problems in the past getting along as a family, have not managed conflict well or not handled change well.3 These problems may surface when decisions need to be made about a loved one.
When a family has dealt with change in a positive way, had experience with managing conflict, and have open communication there is a greater chance that consensus can be reached. Ultimately, one person has to be the designated decision maker and keeping conflict to a minimum and away from the person with Alzheimer’s is in the care recipient’s best interest.
Below is a list of some suggestions for easing the stress of decision-making:
- Have the difficult conversations early while the person with dementia can express their opinions. This includes conversations about who will make decisions for them, what their wishes are for medical interventions and end-of-life care.
- If conversations seem difficult to begin within the family environment perhaps they could start in a trusted physician’s office or the family attorney.
- If conflict exists and is difficult to resolve, seek professional help. This may mean family counseling or legal counsel.
- If you are uncertain of your loved one’s abilities to make decisions consult their physician and or an elder law attorney that can provide you with advice about legal issues that affect older adults.
- Complete legal documents before the diagnosis or as early as possible after diagnosis for a living will, power of attorney, power attorney for healthcare, and a will. This formalizes the person with Alzheimer’s wishes and designates who will be the surrogate decision maker.
- In a larger family, have conversations and divide the responsibilities. For instance, an adult child who has more of a financial background may make decisions regarding money management while another sibling with more healthcare experience manages the medical decision-making.
1. Huthwaite JS, Martin RC, Griffith R, et al: Declining medical decision-making capacity in mild AD: A two-year longitudinal study. Behav. Sci. Law 2006; 24:453-463.
2. Hirschman KD, Kapo JM, Karlawish JHT: Why doesn’t a familymember of a person with advanced dementia use a substituted judgment when making a decision for that person? Am J Geriatr Psychiatry 2006; 14:8: 659-667.
3. Deimling GT, Smerglia VL, Schaeffer ML: The impact of family environment and decision-making satisfaction on caregiver depression: A path analytic model. J Aging Health 2001; 13:47-71.