Preliminary Comments
Information is empowering. I cannot overstate the importance of being informed about your – or your loved one’s – condition and care. However, in order to relate effectively with attorneys, doctors (and other health professionals), you have to ask questions. This article is designed to get you started thinking through questions.
Caveat: Treatment plans should evolve as the disease runs its course. Therefore, the care plan ought not be handled in a set-it-and-forget-it manner. You, as patient (notwithstanding your cognitive limitations) or caregiver (to the best of your ability), have an obligation to inform yourself about the available treatment options. Each option has its own attendant cost/benefit analysis.
Doctor Factors
Finding a Doctor
Far be it from me to suggest that you abandon your trusted, family physician after a diagnosis of Alzheimer’s. However, it is worth considering whether your (or your loved one’s) interests would be better served by going elsewhere for professional advice than by staying with a longtime doc.
Much depends on your doctor’s specific experience and expertise, as well as on the important question of how well all the relevant parties get along.
Some questions to consider include:
How much experience do you have diagnosing and treating patients with Alzheimer’s or other forms of dementia?
This is your (or your loved one’s) life we’re talking about. It is certainly in your interest to try to ensure that you have the most competent care provider that you can afford. Ask your doctor questions. Remember who is working for whom.
Would you be my (or my loved one’s) principal healthcare provider as the disease progresses? Or will I (or my loved one) have to segue into more specialized care at particular diagnostic benchmarks?
If a later change is likely, would it be better to make the change now? Would the change be more or less traumatic as the patient declines? At the very least, you will want to know if you (or your loved one) should consult with a specialist. Conventional specialists may include occupational therapists, speech therapists, eye doctors, etc.
Are you focused mainly on conventional treatments, or are you open to (or even versed in) alternative approaches?
Realize that if you have different treatment “sensibilities” or values than your (or your loved one’s) doctor does, there could be friction. If you would like to consider possibilities for herbal/nutritional interventions, for instance, but your physician thinks that the sun rises and sets with pharmaceuticals, there may be additional tension during examinations at a time when things will probably be tense enough. I hasten to add that this can go both ways. Tension can also arise if you’re inclined to place your trust in modern, scientific advances, but your doctor keeps recommending dietary and other supplements. The moral might be: try to find a doctor with whom you have good rapport.
Visiting a Doctor
Once you have decided upon a physician – or, for that matter, as you are considering your choice – it’s best to have your own ducks in a row, information-wise.[1] For example, you’ll want to have the following on hand:
- Medication list (including any known bad reactions or side effects)
- Notebook (to record doctor’s instructions – and his or her answers to your questions)
Treatment-Plan Factors
It is unlikely that there is a one-size-fits-all solution. Ideally, treatment plans need to be individualized. There are several categories of modifying factors. Some have to do with the patient him- or herself.
Patient Factors
- Age
- Alzheimer’s stage
- Alzheimer’s symptoms
- Financial means
- General health
- Living situation (in a private house, assisted-living facility, nursing home, etc.)
Other factors pertain to the caregiver(s).
Caregiver Factors
- Age
- Availability and scheduling flexibility
- Financial means (and willingness to help)
- General health
- Living situation (living alone – with or without extra room; living with spouse or children; etc.)
Questions to Ask
For my general introduction to the condition, see here: “Alzheimer’s Disease: A Brief Overview.”
Disease: Questions Pertaining to Alzheimer’s Itself
Are you sure that I have (or my loved has) Alzheimer’s? For instance, have you ruled out the possibility that any relevant cognitive/memory problems are simply due to the aging process?
How much experience do you have diagnosing ailments of this sort? Treating Alzheimer’s patients?
What are the symptoms of Alzheimer’s?
What is the usual course of the disease?
What symptoms do I (or does my loved one) have that suggest this diagnosis?
Could these symptoms be caused by some other condition?
Do I (or does my loved one) have any symptoms that seem out of place or peculiar given this diagnosis?
What tests are capable of diagnosing Alzheimer’s? [For my summary of Alzheimer’s tests, see HERE.]
What tests are you relying upon? [For my summary of Alzheimer’s tests, see HERE.]
What stage of Alzheimer’s am I (or is my loved one) in?
What should we expect in terms of changes to sleep patterns? [See HERE and HERE.]
What’s the prognosis? How do you expect the disease to progress? Over how long of a period?
What will subsequent stages be like?
Will the Alzheimer’s negatively impact my (or my loved one’s) overall health? (Increase of dehydration, falling, urinary-tract infection, etc.)
Does Alzheimer’s impact life expectancy?
Is Alzheimer’s genetic or hereditary? [For my summary of Alzheimer’s tests, see HERE.]
Is there an “environmental” component? [For information on one doctor who thinks that Alzheimer’s might have dietary and other triggers, see HERE and HERE.]
Functionality: About Your (Or Your Loved One’s) Capabilities
How long can I (or my loved one) live independently or normally after receiving a diagnosis of Mild Cognitive Impairment or Alzheimer’s?
What can we do to prolong this independence for as long as possible?
Is an Alzheimer’s-afflicted individual a danger to him- or herself? To others?
Do Alzheimer’s sufferers have difficulty with the mechanics of eating?
Besides dietary changes that are made for nutritional reasons [See HERE and HERE], are there certain foods that should be avoided because they may be more likely to cause choking?
Can an Alzheimer’s sufferer take medications him- or herself?
Will I (or my loved one) require help with activities of daily living? Dressing? Eating? Transferring in and out of bed?
Is it legal and safe for me (or my loved one) to drive? Will it eventually be unsafe? How long? What are the signs of a driver who is becoming unsafe? Are periodic driving evaluations required?
[For more information, see ALZHEIMERSPROOF’s articles: “Is It Safe to Drive With Alzheimer’s?”; “Are Drivers With Alzheimer’s More Dangerous than Others?”; and “Is It Legal to Drive With Alzheimer’s Disease?.” And for our state-by-state resources, see: “U.S. Law Guide: Driving With Alzheimer’s.”
What can be done if a manifestly unsafe driver declines or refuses to stop driving? [See “How Do You Alzheimer’s Proof a Car?“]
Support: Regarding Varieties of Available Assistance
How do I tell family and friends about this diagnosis?
What’s expected the emotional effect of Alzheimer’s? On the patient? On family? Etc.
Is Alzheimer’s often associated with anxiety? Depression?
How can I manage my own (or my loved one’s) affective challenges?
Will the Alzheimer’s patient be easily agitated? Are there strategies for calming down a person with Alzheimer’s?
Are there any support groups or organizations in our area? For Alzheimer’s sufferers? For caretakers?
Where can I (or my caregiver) receive training?
What’s your advice for how to communicate as (or with) someone who is cognitively impaired? Are there words to use, or to avoid? How
How do I (or how does my caretaker) learn to check emotional reactions when the Alzheimer’s sufferer is uncontrollable?
Are there memory prompts that I can set up for myself (or for my loved one) at home?
What Alzheimer’s or senior services are available in the area?
Is there any financial aid available for needy families? [See the articles on long-term-care insurance and retiring happy, HERE and HERE.]
Besides medications (see further on), can you suggest any activities that might help to enhance, preserve, or otherwise prolong memories?
Apart from drugs (covered below), can you recommend any activities that can help bolster, conserve, or promote general reasoning abilities?
To put it differently, are there other relevant therapies for Alzheimer’s? Do you recommend that we investigate or pursue any of these?
Relatedly, would intellectual stimulation or physical exercise positively impact my (or my loved one’s) mental focus, health, thinking capabilities, etc.?
Should I consider getting home help, or segueing into an alternative living arrangement? [See, also, the question about custodial care under the subheading “Treatments: Concerning Recommended Interventions,” below.]
If we are going to remain in the home, what do I have to do to keep the house safe? Are there certain items that need to be hidden or removed? [See my five-part series on Alzheimer’s proofing your house: Part 1, Part 2, Part 3, Part 4, and Part 5.]
Do the kitchens and bathrooms require special consideration? [See “How to Alzheimer’s Proof Your House: Kitchens and Bathrooms.”]
Treatments: Concerning Recommended Interventions
What are the available treatment options?
What option or options do you recommend?
On what is your recommendation based? (Alzheimer’s stage? General health concerns? Symptoms?)
If your recommendation is partially stage-relative, when should we expect your recommendation to change?
What pharmaceuticals do you recommend? [For ALZHEIMERSPROOF’s breakdown of common pharmaceutical interventions, see HERE.]
Do the drugs treat the disease itself, or its symptoms?
Do they slow the progression of the disease, or aim to cure it?
Will you periodically be testing my (or my loved one’s) cognition?
Are the medicines effective? Could the medications make the symptoms worse?
What positive results do you expect to see?
How long will we have to wait before we will see results?
How will you track the drug’s effectiveness?
What are the most common side effects? What side effects are most concerning?
Will you periodically check for side effects? Or will you reply on family reports? Or both?
When is it all right to call you? When should we definitely call you?
What sorts of emergencies might arise?
What should I keep in mind in case of an emergency? Who do I call?
Are these proposed pharmaceutical interventions likely complicate or give rise to other medical conditions?
Will the Alzheimer’s Disease affect how you care for other medical conditions?
Are any experimental or “new” treatments available? E.g., are there any clinical trials that I (or my loved one) might qualify for?
Can herbal (or other natural) supplements be helpful additions (or reasonable alternatives)? [For more information, see “6 Drugs That Treat Alzheimer’s and 20+ Natural Alternatives.” For related information, see HERE and HERE.]
Are there any non-drug treatments that you can recommend? [See, again, questions under the subheading “Support: Regarding Varieties of Available Assistance.”]
Do you have a recommendation for a care location? (At home, adult day care, assisted living, nursing home, etc.)
If at home, how can the family make the home safe for the patient?
What do we need to know from a financial standpoint? How expensive is Alzheimer’s care?
When should we consider professional custodial care or nursing home confinement?
What should I do if I (or my loved one) suffers from delusions/hallucinations? [See “11 Tips for Managing Alzheimer’s Delusions & Hallucinations.”]
What should I do if (when!) my loved one wanders off (“elopes”)? How can a wanderer be kept safe? How can wandering be frustrated or prevented? [See the “Master List” to ALZHEIMERSPROOF’s five-part “Ultimate Guide to Alzheimer’s-Proofing a Home.”]
Notes:
[1] If you have a trusted caretaker, family member, or friend who can accompany you, going with him or her might facilitate your comprehension and retention.