Care Partner - Frequently Asked Questions

Being a Care Partner

What can I do to be more patient?

Experienced caregivers tell us that keeping in mind possible causes of challenging behaviors helps them to be much more patient. Repeated questioning or following you around, for example, may be due to (disease-related) problems with memory and feeling confused. Additionally, the importance of self-care activities cannot be overstated. You cannot expect yourself to have endless patience without spending even a brief time regularly doing things that recharge you. Seeking support actively and intentionally (friends, a counselor, support group, respite care) is essential.

What do I do when I get asked the same question over and over again? Or when I get accused of not telling the person something that I did tell them?

Because people with MCI are often unable to retain new information, they may ask the same questions repeatedly—which is also why they may truly believe they were never given the information. Many care partners report that this is one of the most challenging interactions to deal with. Some care partners will write down the answers to the questions that are being repeated; and when the question arises, the care partner says, “I believe we wrote down that information—it's on the calendar in the kitchen.” You can find more information and suggestions here: Repetition | Alzheimer's Association

What is self-care and why is it important?

Self-care is defined as “taking an active role in protecting one's own well-being and happiness.”  Care partners often find that because of their caregiving responsibilities, their own needs take a back seat. Over time, a lack of self-care can cause a care partner’s health to suffer significantly, so it’s vital to make a plan to take breaks, make sure your health care needs are met, and do things that renew you. Call on your support team for assistance.

There are many great resources available to help you put self-care practices in place:

• Caregiver Health | Alzheimer's Association
• Caregiver stress: Don't forget self-care - Mayo Clinic

How should we tell the (adult) children, and when?

“You don’t want to worry them. (Spoiler alert: They are already worried about you.)” How an MCI diagnosis is discussed will be impacted by the amount of information family members typically share about one another’s health conditions and how much baseline knowledge each already has about MCI.

 When a strong family history is present, emotions may naturally run high when a diagnosis is shared. In most families, it can be helpful to talk about concerns that led to the evaluation process. Close family members often have noticed these issues and the diagnosis is just confirmation.

Emphasize that people with MCI function independently is most aspects of daily life. Help may be needed with more complex tasks and sorting these out can be a different conversation. Expect some emotional reactions and several questions. Answers may remain to be determined so far. This is ok: it’s the first of many important talks and you will be figuring a lot of things out together. 

“When” to have the initial conversation may depend on others’ time and distances. Speaking in person when there is ample time and privacy without distractions is preferable.   While the person with the MCI diagnosis and the care partner are also coming to terms with something huge, most adult kids want to be included early if feasible.  Odds are good your family will meet this challenge much the way past obstacles have been encountered together. (See also Mayo link under #7).

Should we tell friends?

When you are thinking about telling friends about your recent diagnosis, consider the following as quite separate:

A) Should the person with MCI divulge their diagnosis to friends?

B.) Does the Care Partner have the individual’s permission to share it with their own network?

As far as “A” goes, if the person with MCI has always been private, telling friends something so personal can be uncomfortable.  It may be worthwhile though if the relationship is important; (ie, this friend is someone you might turn to for support and vice versa).  Close friends, like family, often have already noticed changes in how you process information.  The true (A) question might be closer to: Will my friend treat me differently if/when I share my MCI diagnosis?  Perhaps. They will have their own feelings, questions, etc. and may need time and help to understand what will and will not change. People who care about you may want to know how they can be truly helpful. If a person cannot remain someone on whom you can rely, it may be more about their own ability to navigate issues about cognitive changes or feelings about aging. 

We at CEP hope the answer to “B” will be “YES” because having an adequate support system available can make Care Partners much less vulnerable to becoming overwhelmed. Be mindful that telling others also means trusting them to handle sensitive information as you request so it is essential to be clear about this.

Should we tell the grandchildren?

Many factors should be considered (ages, how much time you regularly spend together, …). Children and adolescents are often very perceptive about changes in a loved one and/or pick up on stress the other adults may be experiencing about these issues.  Some, especially younger children, do not need or want much in the way of detail so a vague observation validating what they observe (eg, Sometimes Nana’s brain has trouble finding names and other words.) It is important to talk with the parents about the conversation you want to have since they’ll be instrumental in helping the kids to understand and cope long-term.

See link for more guidance: How to talk about dementia with children and young people

Common Concerns

I’m not sure my person should still be driving. What do I do?

Knowing when to alter a person’s driving habits is one of the most difficult decisions people with cognitive impairment and their care partners have to navigate.  This booklet is an excellent resource: Safe Driving for a Lifetime - At the Crossroads (hfdstatic.com)

Driving evaluations are discussed in this booklet; they can be very helpful in the decision-making process. There are several assessment programs in the Atlanta area, including one at Emory—see Driving Solutions on this page: Outpatient Rehabilitation Services (emoryhealthcare.org)  There is a fairly large out-of-pocket charge for driving assessments.

I’m not sure my person should still be managing finances. What do I do?

Handling finances is often one of the most emotionally fraught topics families confront even when there is no diagnosis. For a person with early dementia, this topic may also represent many concerns about losing independence in general. It is very important to take steps early since difficulties with complex tasks (like balancing a checkbook) typically as time goes on, as does the risk a person with cognitive impairment may be a victim of financial abuse or fraud.

See link for more guidance: Managing Money Problems in Alzheimer's Disease

How do I get my person to stop watching television all day?

Consider hobbies or interests the individual has typically enjoyed and identify some activities that relate, even loosely. Alternatively, say you need their help and select a simplified task for them to assist with around the house. Provide enough structure & support for the person to participate successfully and be sure to keep in mind your goal (doing something ...other than tv) without too much concern for other outcomes (how well they performed the task), provided they’re safe and not upset by it.

How do I choose a memory care facility? What’s the difference between a PCH, ALF and SNF?

There are some minor differences between Personal Care Homes and Assisted Living Facilities, but both provide their residents assistance as needed with activities of daily living (ADLs;) meals and activities are usually offered. Unless a resident has long-term care insurance, these facilities are almost always paid for out-of-pocket (there are a limited number covered by Medicaid for qualified individuals with lower income.) Skilled nursing facilities, sometimes called nursing homes, provide a higher level of care. They offer rehabilitation for conditions requiring skilled nursing and/or physical, speech or occupational therapy. Most SNFs also have long-term beds for people whose needs exceed what can be provided in ALFs and PCHs. Rehab is paid for (with some conditions) by Medicare; long-term care is not. Again, unless a resident has a long-term care insurance policy, long-term residents of SNFs pay out of pocket. Here’s more information on how LTC is paid for: Paying for Care | National Institute on Aging (nih.gov)

Although there are facilities that are entirely dedicated to caring for people with memory loss, Memory Care is often provided in a separate unit within a facility. These units are usually  secured to prevent residents from wandering. If you’re looking for memory care for a family member, here’s a helpful article: What Is Memory Care and How Much Does It Cost? (aarp.org) You might also consider hiring a geriatric care manager or placement specialist to help you find the best facility for your loved one.

How do I choose a home care agency? Will Medicare pay for in-home care?

Medicare only pays for in-home care if the person’s medical provider prescribes skilled services—skilled nursing and/or physical, speech or occupational therapy.  In-home care which provides assistance with bathing, dressing, meal prep, and light housekeeping is paid for out of pocket unless the person has a long-term care insurance policy which covers it.

To find an agency, you can call your local Area Agency on Aging.

Here’s an article with some great tips: 6 Steps to Finding the In-Home Care Agencies That Are Right For You - Updated for 2021 - AgingInPlace.org

Why would I need a Power of Attorney for finances?

A General Durable POA authorizes someone you trust to make decisions about assets, property and/or income in the event you become unable to manage your financial affairs (temporarily or permanently).  It can assure timely bill payment, regular maintenance on a home and thorough attention to unforeseen events on the signer’s behalf.  (eg power surge during storm knocks out refrigerator /freezer. Appliance and all contents need prompt replacement; FEMA or insurance claim must be filed.)

Consultation with a lawyer who has experience supporting families coping with an MCI diagnosis can be helpful in many ways. Find one through The National Association of Elder Law Attorneys or the Georgia Senior Legal Hotline at 404-657-9915, a service of Atlanta Legal Aid.

Are there any programs that provide financial assistance? Is there a program where a family member can get paid to be the caregiver?

Empowerline (404-463-3333) provides referral to privately or publicly funded programs offering various services for Older Adults or those with disabilities in GA, including programs that provide compensation to a family caregiver unable to work due to their essential care duties.

Empowerline representatives help determine if the recipient of care qualifies for financial assistance to cover all or a part of their costs of care and assist with applications for Medicaid.  The United Way is another excellent resource for community service referrals, and you can now reach them by dialing “211” for information and referral (or visit www.211online.unitedwayatlanta.org/ ).