Questions to Ask when Considering Surgery for a Person with Dementia

If you are facing a decision about surgery for someone with dementia, there are many things to consider and questions to ask. First, to be able to make any medical decisions for a person with dementia, you need to have a durable power attorney for health care that authorizes you to make medical decisions for them. It’s important to make an informed decision because choosing any option will have outcomes that may affect quality of life for the person who needs surgery and for you. Here is a list of questions and things to consider before you make a decision. Remember that every situation is different and some of these may not apply to your situation.

Considering Surgery

1. What is the goal of surgery? For example, if the patient has a knee replacement, will they be able to learn to walk again or will the dementia preclude that from happening? Is the surgery for a hip fracture a comfort measure only, e.g. to relieve pain, or will it help them regain function? Is this surgery necessary? What will happen if we decide not to have the surgery? What is the prognosis with and without surgery?
2. What are the anesthesia risks? Will anesthesia exacerbate the dementia? Will it be permanent or temporary? Is there a difference between general anesthesia or a spinal block or local anesthesia?
3. If the dementia patient is already taking prescribed medications how will those medications interact with the pain medication; what are the side effects? Will the patient be able to continue taking their regular medications before their surgery, during their stay and after surgery? Will the patient’s post-surgery pain medication interact with their other medications?
4. What is the recovery process for this surgery? Does the surgery require strict adherence to keeping the affected area clean, in one position (immobile), or a complex exercise program to actually benefit from the surgery?
5. Advanced Health Care Directive:
   1. We have an advanced health care directive: What possible consequences from the surgery do we need to consider that might result in us having to use this authority? Should we suspend the DNR/DNI until the post-surgery period?
   2. We do not have an advanced health care directive: What possible consequences from the surgery do we need to consider and how will decisions be made about treatment without this power in place—knowing that someone with dementia might not have capacity to sign a power of attorney or make their wishes known?

In the Hospital

1. Does the staff have dementia training and know how to handle behaviors specific to the patient’s needs? How quickly may I join the patient for after surgery? Are there specific visiting hours or may I visit as long as needed?
2. If the patient had no memory issues before the surgery, but has dementia following surgery, what should we be concerned about? There is a concept of hospital induced delirium due to medications and/or disorientation. What should we be on the lookout for?
3. If the patient is agitated before or after the surgery, what is the protocol staff will use to handle this behavior? Will you use medication to calm them down? Will you use restraints to keep them in bed if they try to get out of bed or pull out IVs?

Pain

1. How do you monitor pain for someone with dementia when they can’t verbally express where they have pain, but may show it in other ways—removing clothing, pulling out IV tubes, etc.? How will we know if they are pain free?
2. What are the side effects of pain medication on someone with dementia?
3. What if the person I care for avoids taking medications by mouth? Are there other safe ways to give pain medication?

Recovery

1. What is the rehabilitation process for this surgery?
2. What will the post-surgery instructions be? Will the patient be able to follow post-surgery instructions (don’t touch your eye after eye surgery, always use the walker to get up after knee surgery, etc.)? 
3. Will they be sent to a rehab center or home after the surgery? How long will Medicare reimburse for rehab? What are the criteria? What if Medicare says the patient is no longer covered yet I feel they still need more rehab?”
4. What should I expect the rehab center or rehab at home to do?

Caregiving at Home

1. When the patient is sent home after surgery or rehab, what will I be expected to do at home to care for the patient? How long does it take for the patient to return to full functioning or as good as can be expected?
2. What support services does home health care cover and how will it help me? For how long?
3. How do I handle challenging behaviors at home, such as the patient getting up and not using the walker?