Prior to any diagnosis of dementia or Alzheimer’s disease, you may feel that a loved one is having memory related issues or experiencing some confusion. A thorough medical and neurological evaluation will be needed for a solid diagnosis, as there could be other health reasons for the memory lapse, but going to the doctor is the first step. You may find that your loved one is resistant to the idea of a medical appointment, in which case your very first duty as a caregiver is to try and get them to go. Here are some tips on how to prepare for a pre-diagnosis doctor’s visit. It may be easier to start with your loved one’s primary care physician, whom they know and trust, to get a referral to a memory disorder specialist.
After a dementia or Alzheimer’s diagnosis is made, it is important to approach medical concerns as a “partner” with your loved one versus simply “taking over” their care. Consideration should be given to your loved one’s need for decision-making autonomy unless they can truly no longer make competent decisions. You should, however, ensure you have a Durable Power of Attorney for Health Care decisions and/or a HIPAA (Health Insurance Portability and Accountability Act) waiver to allow you medical information access.
Have your loved one participate in planning for each doctor visit, including filling out an appointment log to ensure you are in synch on an appointment’s objective, what is to be reported and what questions are to be asked. If that is no longer practical, complete it yourself. If you feel the need for additional communication with the doctor, perhaps to give them a “heads-up” to a problem that your loved one may not otherwise mention (perhaps a new toileting issue or some other sensitive point), ask the doctor for their email or private fax number where you can send the information prior to the appointment. You can also try to arrange for a telephone call, should you feel the need for additional two-way communication.
Keep a caregiver’s journal to document medical history, medication management and changes you observe in both behavior (sleeping, eating, mood) and physical symptoms (pain, weight loss, confusion); remember to make this available to all on your caregiving team.
Preparing for a doctor’s visit also involves planning for the actual physical trip. As the disease progresses travel will likely get more difficult. Your loved one is likely to have a particular “best time” of the day; make appointments at that time. To reduce the stress of needing to rush, factor your loved one’s decreasing mobility into the time table in getting to appointments. Prepare for delays and emergencies by packing water, a snack and perhaps a change of clothes or other toileting items.
After each appointment, update your journal or other documentation, and ensure all of your loved one’s medical team gets frequent updates to keep everyone in synch. Provide updates to your loved one’s family and extended caregiving team on a regular basis, always asking for their thoughts and concerns. If considering new medications and/or clinical trials, ensure other family members understand the risks and potential benefits.
And remember, as a caregiver, planning is the key to everything: planning for the future, planning for everyday routines and emergencies, and planning your own care and respite. And don’t forget to plan on a few laughs now and then; it will help you and your loved one as you journey forward.
Blog written by Alzheimer’s Association Volunteer Diane Blum