Top 10 Practical Tips for Caregivers of Alzheimer’s Patients

Caring for a person with Alzheimer’s disease (AD) at home is a difficult task and can become overwhelming at times. Each day brings new challenges as the caregiver copes with changing levels of ability and new patterns of behavior. Research has shown that caregivers themselves often are at increased risk for depression and illness, especially if they do not receive adequate support from family, friends, and the community.

One of the biggest struggles caregivers face is dealing with the difficult behaviors of the person they are caring for. Dressing, bathing, eating-basic activities of daily living-often become difficult to manage for both the person with AD and the caregiver. Having a plan for getting through the day can help caregivers cope. Many caregivers have found it helpful to use strategies for dealing with difficult behaviors and stressful situations. Through trial and error you will find that some of the following tips work, while others do not. Each person with AD is unique and will respond differently, and each person changes over the course of the disease. Do the best you can, and remind yourself to take breaks.

1. Dealing with the Diagnosis

Finding out that a loved one has Alzheimer’s disease can be stressful, frightening, and overwhelming. As you begin to take stock of the situation, here are some tips that may help:

* Ask the doctor any questions you have about AD. Find out what treatments might work best to alleviate symptoms or address behavior problems.
* Contact organizations such as the Alzheimer’s Association and the Alzheimer’s Disease Education and Referral (ADEAR) Center for more information about the disease, treatment options, and caregiving resources. Some community groups may offer classes to teach caregiving, problem-solving, and management skills. See page 20 for information on contacting the ADEAR Center and a variety of other helpful organizations.
* Find a support group where you can share your feelings and concerns. Members of support groups often have helpful ideas or know of useful resources based on their own experiences. Online support groups make it possible for caregivers to receive support without having to leave home.
* Study your day to see if you can develop a routine that makes things go more smoothly. If there are times of day when the person with AD is less confused or more cooperative, plan your routine to make the most of those moments. Keep in mind that the way the person functions may change from day to day, so try to be flexible and adapt your routine as needed.
* Consider using adult day care or respite services to ease the day-to-day demands of caregiving. These services allow you to have a break while knowing that the person with AD is being well cared for.
* Begin to plan for the future. This may include getting financial and legal documents in order, investigating long-term care options, and determining what services are covered by health insurance and Medicare.

2. Communication

Trying to communicate with a person who has AD can be a challenge. Both understanding and being understood may be difficult.

* Choose simple words and short sentences and use a gentle, calm tone of voice.
* Avoid talking to the person with AD like a baby or talking about the person as if he or she weren’t there.
* Minimize distractions and noise-such as the television or radio-to help the person focus on what you are saying.
* Call the person by name, making sure you have his or her attention before speaking.
* Allow enough time for a response. Be careful not to interrupt.
* If the person with AD is struggling to find a word or communicate a thought, gently try to provide the word he or she is looking for.
* Try to frame questions and instructions in a positive way.

While some people with AD don’t mind bathing, for others it is a frightening, confusing experience. Advance planning can help make bath time better for both of you.

3. Bathing

* Plan the bath or shower for the time of day when the person is most calm and agreeable. Be consistent. Try to develop a routine.
* Respect the fact that bathing is scary and uncomfortable for some people with AD. Be gentle and respectful. Be patient and calm.
* Tell the person what you are going to do, step by step, and allow him or her to do as much as possible.
* Prepare in advance. Make sure you have everything you need ready and in the bathroom before beginning. Draw the bath ahead of time.
* Be sensitive to the temperature. Warm up the room beforehand if necessary and keep extra towels and a robe nearby. Test the water temperature before beginning the bath or shower.
* Minimize safety risks by using a handheld showerhead, shower bench, grab bars, and nonskid bath mats. Never leave the person alone in the bath or shower.
* Try a sponge bath. Bathing may not be necessary every day. A sponge bath can be effective between showers or baths.

4. Eating

Eating can be a challenge. Some people with AD want to eat all the time, while others have to be encouraged to maintain a good diet.

* View mealtimes as opportunities for social interaction and success for the person with AD. Try to be patient and avoid rushing, and be sensitive to confusion and anxiety.
* Aim for a quiet, calm, reassuring mealtime atmosphere by limiting noise and other distractions.
* Maintain familiar mealtime routines, but adapt to the person’s changing needs.
* Give the person food choices, but limit the number of choices. Try to offer appealing foods that have familiar flavors, varied textures, and different colors.
* Serve small portions or several small meals throughout the day. Make healthy snacks, finger foods, and shakes available. In the earlier stages of dementia, be aware of the possibility of overeating.
* Choose dishes and eating tools that promote independence. If the person has trouble using utensils, use a bowl instead of a plate, or offer utensils with large or built-up handles. Use straws or cups with lids to make drinking easier.
* Encourage the person to drink plenty of fluids throughout the day to avoid dehydration.
* As the disease progresses, be aware of the increased risk of choking because of chewing and swallowing problems.
* Maintain routine dental checkups and daily oral health care to keep the mouth and teeth healthy.

5. Activities

What to do all day? Finding activities that the person with AD can do and is interested in can be a challenge. Building on current skills generally works better than trying to teach something new.

* Don’t expect too much. Simple activities often are best, especially when they use current abilities.
* Help the person get started on an activity. Break the activity down into small steps and praise the person for each step he or she completes.
* Watch for signs of agitation or frustration with an activity. Gently help or distract the person to something else.
* Incorporate activities the person seems to enjoy into your daily routine and try to do them at a similar time each day.
* Try to include the person with AD in the entire activity process. For instance, at mealtimes, encourage the person to help prepare the food, set the table, pull out the chairs, or put away the dishes. This can help maintain functional skills, enhance feelings of personal control, and make good use of time.
* Take advantage of adult day services, which provide various activities for the person with AD, as well as an opportunity for caregivers to gain temporary relief from tasks associated with caregiving. Transportation and meals often are provided.

6. Hallucinations and Delusions

As the disease progresses, a person with AD may experience hallucinations and/or delusions. Hallucinations are when the person sees, hears, smells, tastes, or feels something that is not there. Delusions are false beliefs from which the person cannot be dissuaded.

* Sometimes hallucinations and delusions are a sign of a physical illness. Keep track of what the person is experiencing and discuss it with the doctor.
* Avoid arguing with the person about what he or she sees or hears. Try to respond to the feelings he or she is expressing, and provide reassurance and comfort.
* Try to distract the person to another topic or activity. Sometimes moving to another room or going outside for a walk may help.
* Turn off the television set when violent or disturbing programs are on. The person with AD may not be able to distinguish television programming from reality.
* Make sure the person is safe and does not have access to anything he or she could use to harm anyone.

7. Home Safety

Caregivers of people with AD often have to look at their homes through new eyes to identify and correct safety risks. Creating a safe environment can prevent many stressful and dangerous situations. The ADEAR Center offers the booklet, Home Safety for People with Alzheimer’s Disease, which lists many helpful tips.
Install secure locks on all outside windows and doors, especially if the person is prone to wandering. Remove the locks on bathroom doors to prevent the person from accidentally locking himself or herself in.

* Use childproof latches on kitchen cabinets and anyplace where cleaning supplies or other chemicals are kept.
* Label medications and keep them locked up. Also make sure knives, lighters and matches, and guns are secured and out of reach.
* Keep the house free from clutter. Remove scatter rugs and anything else that might contribute to a fall. Make sure lighting is good both inside and out.
* Be alert to and address kitchen-safety issues, such as the person forgetting to turn off the stove after cooking. Consider installing an automatic shut-off switch on the stove to prevent burns or fire.

8. Visiting the Doctor

It is important that the person with AD receive regular medical care. Advance planning can help the trip to the doctor’s office go more smoothly.

* Try to schedule the appointment for the person’s best time of day. Also, ask the office staff what time of day the office is least crowded.
* Let the office staff know in advance that this person is confused. If there is something they might be able to do to make the visit go more smoothly, ask.
* Don’t tell the person about the appointment until the day of the visit or even shortly before it is time to go. Be positive and matter-of-fact.
* Bring along something for the person to eat and drink and any activity that he or she may enjoy.
* Have a friend or another family member go with you on the trip, so that one of you can be with the person while the other speaks with the doctor.

9. Visiting a Person with AD

Visitors are important to people with AD. They may not always remember who the visitors are, but just the human connection has value. Here are some ideas to share with someone who is planning to visit a person with AD.

* Plan the visit at the time of the day when the person is at his or her best. Consider bringing along some kind of activity, such as something familiar to read or photo albums to look at, but be prepared to skip it if necessary.
* Be calm and quiet. Avoid using a loud tone of voice or talking to the person as if he or she were a child. Respect the person’s personal space and don’t get too close.
* Try to establish eye contact and call the person by name to get his or her attention. Remind the person who you are if he or she doesn’t seem to recognize you.
* If the person is confused, don’t argue. Respond to the feelings you hear being communicated, and distract the person to a different topic if necessary.

If the person doesn’t recognize you, is unkind, or responds angrily, remember not to take it personally. He or she is reacting out of confusion.

10. Choosing a Nursing Home

For many caregivers, there comes a point when they are no longer able to take care of their loved one at home. Choosing a residential care facility-a nursing home or an assisted living facility-is a big decision, and it can be hard to know where to start.

* It’s helpful to gather information about services and options before the need actually arises. This gives you time to explore fully all the possibilities before making a decision.
* Determine what facilities are in your area. Doctors, friends and relatives, hospital social workers, and religious organizations may be able to help you identify specific facilities.
* Make a list of questions you would like to ask the staff. Think about what is important to you, such as activity programs, transportation, or special units for people with AD.
* Contact the places that interest you and make an appointment to visit. Talk to the administration, nursing staff, and residents.
* Observe the way the facility runs and how residents are treated. You may want to drop by again unannounced to see if your impressions are the same.
* Find out what kinds of programs and services are offered for people with AD and their families. Ask about staff training in dementia care, and check to see what the policy is about family participation in planning patient care.
* Check on room availability, cost and method of payment, and participation in Medicare or Medicaid. You may want to place your name on a waiting list even if you are not ready to make an immediate decision about long-term care.
* Once you have made a decision, be sure you understand the terms of the contract and financial agreement. You may want to have a lawyer review the documents with you before signing.
* Moving is a big change for both the person with AD and the caregiver. A social worker may be able to help you plan for and adjust to the move. It is important to have support during this difficult transition.

For More Information

Several organizations offer information for caregivers about AD. To learn more about support groups, services, research, and additional publications, you may wish to contact the following:

Alzheimer’s Disease Education & Referral (ADEAR) Center
Web address: www.alzheimers.nia.nih.gov

Alzheimer’s Association
Web address: www.alz.org

Children of Aging Parents
Web address: www.caps4caregivers.org

Eldercare Locator
Web address: www.eldercare.gov

Family Caregiver Alliance
Web address: www.caregiver.org

The National Institute on Aging Information Center
Web address: www.nia.nih.gov

The Simon Foundation for Continence
Web address: www.simonfoundation.org

Well Spouse Association
Web address: www.wellspouse.org

Source: U.S. Department of Health and Human Services, Public Health Services, National Institutes of Health, National Institute on Aging – March 2007, Oct 26, 2007
http://www.nia.nih.gov/Alzheimers/Publications/caregiverguide.htm#intro

The National Institute on Aging gratefully acknowledges the following Alzheimer’s Disease Centers for their valuable contributions: Duke University Joseph and Kathleen Bryan Alzheimer’s Disease Research Center and The Johns Hopkins University Alzheimer’s Disease Center.

For more information: www.nia.nih.gov

Top 10 Medicare Advantage Plan Questions for Senior Care, Cost, and Housing- Explained

Defining what is a Medicare Advantage Plan, Key differences between types of Medicare, and signing up for Medicare.

1. What is Medicare Advantage Plan?

The Centers for Medicare and Medicaid Services (CMS) oversees Medicare. The CMS contracts with private companies that create Medicare Advantage plans that are offered to eligible seniors. A Medicare recipient can then enroll in regular Medicare or a Medicare Advantage plan. The Medicare Advantage plan aims to keep you healthy, provide quality care, and improve wellness. An original Medicare plan would be considered a Fee For Service plan. 

2. What are some of the key differences in health benefits that are offered through Medicare Advantage plans?

Teeth, Eyes, and Ears! A Medicare Advantage plan can include additional benefits that regular Medicare does not provide. For example, many Medicare Advantage plans provide dental, vision, and hearing (audiology) benefits; otherwise, the senior beneficiary would have to pay out of pocket. Additionally, most Medicare Advantage plans offer drug coverage which can be very expensive if one pays out of pocket. Some additional benefits that some plans offer are over-the-counter benefits, meals, remote access, acupuncture, and transportation. Some of these benefits are also helpful to the home caregiver who is caregiving for a loved one. Each year the benefits change, for example, a couple of Medicare Advantage plans increased their levels of in-home support for 2023.

3. What are the costs of regular Medicare versus Medicare Advantage Plans?

Although costs vary, generally speaking, the premiums are lower or even $0 with the Medicare Advantage Plans. Copays can be lower as well. When looking at costs, it’s good to consider to include the savings from the additional benefits received from the Medicare Advantage Plans. Each firm can provide several different plans you can choose from which differ in cost. For example, UnitedHealthcare is one of the largest firms(companies) offering Medical Advantage plans, but within UnitedHealthcare, there are several plans to choose from. In 2023, there were a total of 9 firms offering a total of 43 plans. 

4.  What is the key difference between Medicare Advantage plans and traditional Medicare?

The most significant difference you’ll notice with the Medicare Advantage plan is the network of providers and doctors you can see. Each Medicare Advantage plan has a network of doctors and providers you can choose from, and the doctor or provider you currently see may not be a part of that network. 

For example, you’ve been seeing Dr. Jackson for several years and continued seeing Dr. Jackson after you turned 65; now you’re 70 and enrolled in a Medicare Advantage. Dr. Jackson is not in the network of the Medicare Advantage plan, and you have other Dr.s and providers to choose from. The Medicare Advantage plans you choose will give you a list of all the providers you can choose from. 

Note: Emergency visits and urgent care visits are typically covered nationwide. 

5. Are the Medicare Advantage plans a new thing? 

Medicare Advantage plans have been around for over fifteen years. Recently, its popularity has significantly grown due to the lower costs of premiums and the services it provides the Medicare Advantage plan members. Many Medicare Advantage plans include additional benefits that regular fee-for-service/traditional Medicare doesn’t offer. Medicare Advantage plans were created to drive innovation and plan design. 

In Jan 2023, the number of individuals enrolled in Medicare Advantage plans surpassed 30 million people, and the number of traditional Medicare was just under 30 million people. Therefore, more individuals are enrolled in Medicare Advantage plans than the regular fee-for-service. Additionally, Medicare Advantage plans understand the importance of staying healthy at home, and offer a variety of services that traditional Medicare doesn’t provide, some plans, for example, provide Part B rebates, telemonitoring, transportation, and bathroom safety. 

6.   Does the traditional Medicare or Medicare Advantage plan leave you exposed to additional out-of-pocket expenditures?

Generally speaking, the Medicare Advantage program can offer not only more security but also minimize the additional out-of-pocket risk associated with care requirements that can be expensive. Please read all benefits carefully of the Medicare Advantage plans, but the goal of the Medicare Advantage plan is to put a cap on medical expenses. Medicare Advantage plans continue to adapt and evolve to meet our current population’s needs and care requirements. In a traditional Medicare Fee For Service model, you may be exposed to risk of for a lot of expenses you did not account for. Therefore, out of pocket expenditures are typically higher in traditional Medicare Programs.

7.  I have specific needs or am a part of a particular population. Would a Medicare Advantage plan be right for me?

Medicare Advantage plans to continue evolving to meet specific populations’ needs, address particular diseases, and look at the population as a whole from a health equity standpoint. The nice thing about Medicare Advantage plans is you can choose which plan to enroll in. Various firms and companies have contracted with the CMS and developed Medicare Advantage plans, and one of them may be right for you or the person you care for. The CMS recognizes that Medicare Advantage plans are a critical par of advancing health equity. 

8. What if I sign up for a Medicare Advantage plan and I don’t like it? Can I switch back to regular Medicare?  

Yes. You can switch between Medicare Fee For Service and Medicare Advantage plan typically during the Medicare Annual Enrollment Period and the Medicare Special Enrollment Period. Therefore, your “risk” of trying out a Medicare Advantage plan is ultimately one year. There are some plans where you can switch plans more often, and please ask the author for further detail. 

9.  I am a home caregiver taking care of a loved one. What benefits can a Medicare Advantage plan offer me to help care for my loved one?

With the innovation and the plan design of many of these Medicare Advantage plans, I’d encourage you to do your research and find a plan that is designed not only for the person you’re caring for but also for you as a caregiver. Some Medicare Advantage plans realize how vital home caregiving is and how resource-depleting home caregiving can be. The goal of the Medicare Advantage plan is to keep the individual healthy, and often, helping with home caregiving does just that. Therefore, look at the benefits that some of the plans offer such as transportation, bathroom safety, over the counter help, remote access and meals. 

10. I’m considering moving into an assisted living community. Is there a Medicare Advantage plan this is right for me?

Several senior living operators are realizing the importance of clinical outcomes and ensuring you live well and are healthy for a long time. Additionally, some senior living operators are partnering and collaborating with Medicare Advantage plans to keep the resident healthier for longer. When searching for a senior housing provider, ask what type of clinical outcomes they focus on,  what providers and therapy they offer, and what clinical programs do they have in place to reduce the risk of complications or incidences that can be costly. Ultimately, staying healthy means providing upstream prevention programs to minimize into downstream complications. 

Final Thought: Ultimately, the goal of a Medicare Advantage plan is to provide Great Access to Quality Care at an Affordable Cost. 

Social Wellness

Social Wellness Month: July 2023

Social Wellness and Why it Matters

July is Social Wellness month, and after living through a worldwide pandemic, let’s take advantage of opportunities for socializing! It is so important to recognize the need for Social Wellness, especially for Older Americans who experienced so much isolation during the Covid pandemic. Studies have found that people who stay social tend to live longer, have healthier cardiovascular systems, and respond better to stress. Ways to practice social wellness can include planting in your neighborhood garden, joining a gym or exercise group, or going out for coffee with a friend. Let us know how you practice Social Wellness!

Other notable celebrations in the month of July include…

-Independence Day, July 4

-Disability Pride Month

-Minority Mental Health Awareness Month

-Plastic Free July

“July was named in honor of Julius Caesar. Quintilis, which was his birth month, was renamed July when he died. Quintilis means “fifth month” in Latin, which represents where this month originally fell in the Roman calendar.”

Learn more about the history of previous months here.

President & CEO of Alzheimer’s Association Update

This message is sent to all Alzheimer’s Association and Alzheimer’s Impact Movement board members, all Alzheimer’s Association staff, and volunteers and supporters of AIM and the Alzheimer’s Association.
Today, we are living history: the U.S. Food and Drug Administration (FDA) granted traditional approval of lecanemab, sold under the brand name Leqembi, for the treatment of early-stage Alzheimer’s disease. This is the first traditional approval granted for an Alzheimer’s treatment that changes the underlying course of the disease. Learn more here

In addition, the Centers for Medicare & Medicaid Services (CMS) announced it will cover the treatment through Medicare. Read our statement here

The Alzheimer’s Association has long been the leading voice on behalf of people living with this fatal disease. They deserve the opportunity to discuss and choose, with their doctors and family, whether an approved treatment is right for them with as few barriers as possible. 

We owe a debt of thanks to all who worked to make this happen: bipartisan members of Congress, state attorneys generalclinicians, and, most importantly, the thousands of our volunteers from communities all across the country. 

While this is a tremendous step forward, the Alzheimer’s Association’s work is far from done. We won’t rest until everyone living with Alzheimer’s — at any stage — can get the treatment, care and support they need and deserve. 

The next few weeks and months are critically important. We will work closely with CMS, other payers, the physician community, our health systems and other community partners to work toward a smooth rollout for patients who can benefit. 

Thank you for all you do to move our mission forward. You can always find additional information at alz.org or at our 24/7 Helpline (800.272.3900).
Joanne Pike, DrPH
President & CEO