A Message to Caregivers

Are you the caregiver? Hi, I am the doctor!

Maybe this is your first attempt at getting your loved one evaluated, after trying for quite some time to get them to agree to the visit.

Or maybe you have already been to a variety of doctors, have had lots of tests, but you still do not really understand what is going on. The doctor may have said  your loved one seemed “okay” for their age, but you can tell something is wrong. Or maybe they used the term dementia but did not provide any further clarification as to what is causing the dementia, what the stage is, and what to do about it.

Or maybe you know the specifics of the diagnosis, but your loved one is getting worse, and no one can seem to help you manage the symptoms and improve their quality of life…and yours.

I can help with all of the above. My goal is to get you as specific an answer as possible as to what is causing their symptoms, what the prognosis is, what treatments are available (and which should be avoided), and what we can do to improve quality of life, maximize safety, and prepare for the future.

You matter too.

Too often, a caregiver’s needs are not addressed by the patient’s doctors. This may be due to a lack of time in traditional office visits, a lack of knowledge and understanding on the part of the physician, or both.

I never rush my visits. The patient is given all the time they need, but so are you, their care partner. You both deserve ample time and attention and my goal is to give it to you.

When your loved one has a consultation with me, I also provide various services to you, the caregiver, such as:

  • Counseling on best communication practices to use. We can troubleshoot an incident and go over specific examples of phrases to avoid, and ones that may be good to try next time.
  • Providing personalized suggestions of activities for you and the patient to pursue to promote cognitive stimulation and joyful experiences.
  • Educating on lifestyle changes that are important for keeping the brain healthy—not just the patient’s brain but yours too!
  • Recommending specific stress management strategies for you.  You may be under a tremendous amount of stress from not only doing the work of the actual caregiving, but also related to your fears of what your loved one’s dementia diagnosis means for you.

•Are you the spouse who is worried about the future? About how you will cope as they get worse? About what will happen to them if something happens to you first?

•Are you the child worried about your own risk of dementia? Do you have siblings who expect you to do it all? Are you barely hanging on with this full-time job of caregiving, added to maybe two other full-time jobs of working and being a spouse and a parent yourself?

You do not have to go through this alone.

It can all feel like too much. I  will listen to all of your challenges, worries, and fears and give you specific ideas for how to start making things more manageable.

Frequently Asked Questions

Q: Should we tell them we are seeing you to evaluate their memory? I am afraid it will upset them, but I also do not want to lie.

A: Only you know what your loved one with cognitive changes can tolerate. But I suggest the following tips as a guide:

  • The visit can be framed as a checkup, a brain checkup, a health checkup, etc.
  • The visit can be framed as a referral or checkup that was recommended by their trusted primary care doctor or other provider.
  • The visit can be normalized as the type of checkup all people of their age get done (like a colonoscopy or mammogram).

Q: During the visit, do you have to tell them they have dementia? I am afraid it will depress them.

A: The literature reports that only 40% of specialists and 28% of primary care doctors regularly disclose a diagnosis of Alzheimer’s disease (the most common cause of dementia). Maybe you have first-hand experience with this, noticing that the patient’s doctors have not been as forthcoming with the changes you all see as you would have expected. Barriers to full disclosure often include fear of causing the patient distress, destroying hope, the doctor’s uncertainty over the diagnosis, and the patient’s lack of awareness and insight about their problems. These numbers, however, are in stark contrast to those of surveys that have been done assessing what information the patient would want to be told. Across studies, up to 90% of people would want to be told they had Alzheimer’s disease, so they can plan for the future, settle family matters, and obtain a second opinion. It is very important that the patient has a say in how much they are told about their diagnosis.

Q: So how do I know how much or little to tell them?

A: I can figure that out with you. Every patient deserves to have their autonomy be respected. Since I only see patients with cognitive problems, I have experience with all different scenarios. And I am in no rush. In every patient evaluation I find a way to allow the patient to decide how much or how little they want to know about their condition, and we go from there. I can only recall a few times when a patient did not want to be included in the discussion of their diagnosis, and their wishes were of course respected. You do not have to take on the burden alone, we can figure it out together.

Let Dr. Deutsch Help.