Where are my keys? Have you seen my phone anywhere? What time is that appointment?
Everyone forgets things, and most people experience some sort of memory loss with age. As a caregiver, how do you know when forgetfulness is actually something more than just an inconvenience? And how do you relay your concerns to your loved one’s health care team?
Warning signs of problematic memory loss
Normal forgetfulness becomes a concern when it hinders the completion of daily tasks or makes day-to-day life challenging. Below are warning signs to watch for and when to know it’s time to communicate with your loved one’s provider:
- Repeatedly asking the same question
- Becoming disoriented in familiar places or unable to follow directions
- Feeling confusion about where they are, who they are, or the approximate time of day
Memory issues are important to address. While memory issues can be the cause of dementia, other times they can be symptoms of life-threatening health conditions, including:
- Medicine reaction
- Thyroid problem
- Vitamin deficiency
- Metabolic disorders
Talk to your loved one first, if possible
If your loved one is in the early stages of a memory loss-related disorder, discuss your concerns with them directly. This will make them feel included in their health journey, and will reinforce the bond between you. And while watching the decline of a loved one can be distressing to you, other family members and friends, talking about it is essential.
“It’s scary to think your loved one might have Alzheimer’s disease or another type of dementia,” said Magdalena Bednarczyk, MD, a geriatrician at Rush University Medical Center. “But it’s important to have that conversation because people experiencing memory changes often don’t realize it. Or they know something is wrong, but they’re reluctant to tell anyone. Either way, the problem isn’t addressed and gets worse.”
This is a difficult conversation to have, so try to plan out what you are going to say beforehand. Then plan a gentle and compassionate way to begin the conversation. Perhaps, start by sharing some of the things you’re seeing and asking if your loved one is also concerned: “Dad, we were worried when you forgot to show up at your grandson’s birthday. It’s not like you. I know you love your grandkids so much. Were you concerned when this happened, too? Can we talk to you about why that happened?”
Encourage dialogue between you and your loved one, Bednarczyk said.
“Make sure you aren’t dictating – ‘This is what we’re going to do’ – but convincing your loved one to help figure out a way to move forward. You want this to be a partnership.”
Examples of questions to ask your loved one to keep the conversation open, honest and bidirectional include:
- Have they noticed the symptoms themselves?
- How do they feel about their memory/behavioral issues? Do they think they are just a natural part of aging?
- Would they consider talking about it with their health care provider? If so, would they feel better if someone offered to go see the doctor with them? If so, who?
Also, consider how you’ll approach the conversation. Determining the best person – or people – to broach the subject is always helpful. For example, is it better to have a one-on-one talk or involve others?
Be sure to take timing and the environment into consideration as well: “I don’t recommend talking in a public space, like a restaurant,” Bednarczyk said. “You want to be in a familiar but quiet surrounding where you won’t be interrupted and your loved one will feel comfortable, not threatened or anxious.”
Finally, it’s always easier to have a tough conversation when you don’t feel time pressure. So, don’t try to rush the conversation or “squeeze it in.” Select a time when there’s no pressing time constraint so you and your loved one feel more relaxed and at ease.
Bednarczyk recommends having the conversation shortly before their next doctor appointment: ”It’s a good idea to have the conversation shortly before a scheduled appointment with your loved one’s primary care doctor or geriatrician,” she said. “That way, they can see their doctor soon after your talk.”
So, if you don’t have an upcoming appointment, schedule one, then plan the conversation for shortly beforehand.
What to tell the physician
If they are in later stages of dementia, you may need to talk to the health team privately. Perhaps explain your concerns with them in the hallway or in a place other than the room your loved one is in.
Planning ahead will save time and energy—both for you and the provider:
- Make sure you have a complete list of medications, including over-the-counter medicines and supplements. List their amount and frequency. Bringing a printed copy is extremely helpful to the physician, or even bag up all the medications and bring them with you.
- Document and print your loved one’s medical and family history.
- Bring a list of questions. In the moment it’s easy to forget what you want to ask. Also, bring paper and a pen so you can jot down notes.
Once you have the health care provider’s attention, how can you clearly and succinctly convey your concerns? Below are a few suggestions:
- Be specific. Instead of just vaguely saying they’ve been having trouble with their memory, try giving specific examples of how it has impaired their life. For example, you could say, “They’ve always been able to manage their finances, but lately they’ve frequently been late paying their bills or have even forgotten entirely.” Write these examples down beforehand.
- Be prepared to report when the memory issues began. Try your best to be specific, and include whether it was a sudden change or a gradual change over time.
- Ask what you can do as a caregiver to help your loved one.
- Ask what to expect moving forward. Managing your own distress and confusion may be easier if you are prepared for future symptoms associated with further decline.
Being the bearer of bad news can be a difficult role for the caregiver. Remember to be gentle with your loved one but also yourself. Research shows that caregivers have higher levels of depression, suffer from elevated levels of stress, have an increased risk of heart disease, and have lower levels of self-care. For these reasons, self-care is so important for caregivers.
Remember the mantra: “Self care is not an indulgence; it’s a discipline.” In order to be there for them, your physical, mental and emotional health should come first.