Doctor appointments can be very stressful for people with Alzheimer’s disease. Oftentimes, there is little time but many questions related to their well-being and care plan. As their caregiver, you have an essential role in helping them make the most out of their time with their healthcare providers, whether a specialist for a specific treatment or their general care practitioner.
Joan DiPaola, a Senior Dementia Care Specialist at CareOne’s Paramus Harmony Village, says that a prepared caregiver is the best way to support someone with Alzheimer’s as they attend appointments related to their care.
“Caregivers should always have a notepad or small pocket-size journal to take notes. They should also keep a log of challenges they are facing while caring for their loved one and its impact on the family unit.”
“When planning for a doctor’s office visit, it is in everyone’s best interest that the caregiver and the person with Alzheimer’s feel relaxed and comfortable,” adds Gerda Maissel, president at My MD Advisor.
Here are some more ways caregivers can prepare themselves and their loved ones for doctors visits:
Gather and complete the necessary paperwork. Early in the course of the disease, completing paperwork that assists with future decision-making and care is important. Make sure the doctor’s office has copies. Revisit these documents periodically during doctor visits to ensure that your care decisions and written goals are consistent. The documents include:
- A privacy release form with providers that specifies who can discuss your loved one’s diagnoses, treatments, and other medical concerns
- A durable power of attorney for health care, which designates who can make medical care decisions when the person with Alzheimer’s disease is no longer able to do so
- An advanced directive that enables a person to make decisions about future care
Completing this paperwork and any other basic forms required by providers ahead of time helps prevent delays in care, keeps you organized, and helps the appointment move along smoothly.
Schedule wisely. Maissel suggests scheduling appointments at a time of day that best fits into your loved one’s routine. “Night owls will not do well with early morning medical appointments.” Evening appointments may come with more agitation and aggression associated with sundowning.
Be ready to answer the doctor’s questions and give details. Maissel says caregivers should have a current and accurate list of medications, knowledge of basic past medical history, and be able to speak about recent medical events such as hospitalization or surgery.
“They should also understand the purpose of the appointment,” she adds. “For example, if the visit is for a follow-up, what was the original appointment about, and what has changed in the condition since the last visit?”
DiPaola says caregivers might expect the doctor to ask the following questions:
- What’s been going on since your loved one’s last visit? Any special events, programs attended, or family visits? And how did they go for you both?
- Have there been any changes to their behaviors, routines, or eating habits?
- Is your loved one sleeping through the night?
- Is your loved one self-isolating and refusing to go out and socialize?
- Have there been any personality changes (increased frustration, verbal aggression, physical lashing out), or is their mood stable? When do these behaviors present themselves, and how long do they last?
- Is your loved one compliant with medication administration, and how is the medication being dispensed?
- Are you, as the caregiver, receiving any type of respite care or support?
- Would you like to speak with a social worker/therapist about the burden of caregiving?
- Is your loved one resistant to care? How are you coping with that?
Bring medications or a complete medication record. List all medications, including over-the-counter drugs, vitamins, and herbal or dietary supplements. Remember — your loved one may be taking medications for multiple health conditions prescribed by different providers. Bring medication containers or a complete list (including dosages) to each appointment. A complete medication record for your loved one includes this information:
- Name of the medication
- Daily dosage
- Name and contact information of the prescribing doctor
- Prior medications that have been tried and stopped
Help your loved one know what to expect. Maissel says reassuring your loved one ahead of time and letting them know the visit is for their well-being is also very important in reducing any fear they may feel about an upcoming appointment.
DiPaola says when you tell your loved one about their appointment(s) tends to depend on the stage of their Alzheimer’s disease or dementia. “In the early stages of the disease, I recommend not to tell the person with dementia about the appointment too far in advance — just 1-2 days before the appointment. Giving information too far in advance may cause them to mix up the dates and induce anxiety, perseveration, and confusion.”
Try these other tips to help ease anxiety and minimize stress ahead of the appointment:
- Put the appointment on their loved one’s calendars and set up reminders so they don’t forget
- Allow for plenty of time to travel “so that they are able to remain relaxed if something goes off schedule during the preparation to leave,” says Maissel.
- Plan something for them to look forward to after the appointment — like going out for a treat — and focus on that rather than the appointment.
When the appointment day arrives, try these tips to get the most out of the visit:
Designate a companion for the appointment. DiPaola always recommends that a companion accompanies a person living with Alzheimer’s disease at each appointment. “That could be a designated family member, friend or neighbor, or caregiver, so the information being relayed to the power of attorney or healthcare proxy is accurate because not everyone with dementia can remember what the doctor said.”
She adds that caregivers should only ask questions of the doctor if the person with Alzheimer’s disease is unable to ask questions themselves: “We should never speak over or for a person living with Alzheimer’s or dementia.”
Ease anxiety and minimize stress. Get there early enough to allow time to get settled but not so early that your loved one gets bored or agitated. Ask the doctor’s office ahead of time if there is a quiet place to wait for the doctor, and bring a favorite book, magazine, or activity for the waiting time.
During the appointment, caregivers should stay with the person as much as possible,” Maissel says. “Let them know what to expect next. If the person with Alzheimer’s needs to be undressed, inquire about what body part needs to be available for examination. No one likes to sit around in a drafty office wearing nothing but an open-backed medical gown.”
Ask questions. Your loved one’s doctor is an important source of support and information for their care, and these appointments are your chance to access their knowledge and resources. If you don’t understand something, ask questions until you do. Write down questions and concerns beforehand and bring the list to the appointment. If you get home and realize you or your loved one still have questions, call the doctor to discuss them.
DiPaola suggests this list of questions to consider asking your loved one’s doctor:
- What type of dementia does my loved one have, and is there a cure for this?
- Is this something that is inherited and runs in families? And can the family do anything now to prevent this?
- Where can I get more information to learn about this diagnosis?
- What symptoms other than memory impairment might my loved one experience?
- Is there a specific medication my loved one can take to slow down the progression of this disease?
- What is the typical course of mental decline? How long does my loved one have in terms of mental capacity?
- What is sundowning, and how can I avoid or prevent it?
- How do I stay healthy while caring for my loved one?
- How do I get support for myself? Where can I reach out for support?
- How can we maintain a healthy lifestyle? Can we still travel and go out socially with friends and families?
Talk about treatment goals. As your loved one’s Alzheimer’s disease progresses, so will the goals of their treatment. Are their medications working? Do dosages need to be changed or monitored? Could they benefit from a new type of therapy? Be sure to ask about the risks and benefits of each treatment plan and involve your loved one in the discussions whenever possible.
“Caregivers should understand what is being recommended, why it’s being recommended, and what happens if they choose not to follow it. They should also have a clear understanding of options and timeframes,” says Maissel.
Keep good records. After each appointment, ensure your loved one’s records are up-to-date with any changes to care plans and medications. Be sure this information is stored somewhere secure so that it protects their information, but somewhere accessible so that those involved in any part of your loved one’s treatment, like other providers, caregivers, and family members. There are streamline and protect personal health care information.
Leave with a plan. At the end of the appointment, ask the doctor to recap the most important takeaways and write them down, including any notes about changes in treatment plans or follow-up steps needed (like scheduling further appointments or testing).