Critical Steps for Caregivers During the Three Stages of Alzheimer’s

In honor of National Alzheimer’s Awareness Month, Chaffin Luhana is presenting a series of articles to help patients and their loved ones manage this devastating disease. As more and more families struggle to come to grips with the challenges that Alzheimer’s and other forms of dementia present, it’s imperative that we spread the word about the various resources that are available, as this is not a disease any patient or family can manage alone.

Recently, Chaffin Luhana team members, Carol Neeley and Kendra Goldhirsch collaborated with Jami Pazuchanics, registered nurse and care manager certified with Optimal Aging Advisors (OAA) in Pittsburgh, Pennsylvania. OAA provides guidance, coaching, and planning assistance to help families and loved ones better manage the task of caregiving and all it entails, including tough decision making, care management and monitoring, emergency preparedness, and more.

For families that are feeling at a loss as to what to do next, OAA professionals provide a way forward, giving caregivers a welcome peace of mind. Below are several of the resources Jami recommends to help both the patient and the family during the three stages of Alzheimer’s disease.

1. When a Loved One Starts Showing Symptoms of Dementia

Alzheimer’s disease and other types of dementia tend to whittle away at the brain, with symptoms appearing intermittently at first and in such a way as they may be excused as simple forgetfulness or fatigue.

The American Society on Aging lists a few ways you can tell the difference between normal memory slips and possible dementia:

• Reminders: If reminders help the person remember, it’s likely normal forgetfulness. If even after being reminded, however, the person still doesn’t recall the name, appointment, or bill that was to be paid, that’s a more serious sign and could indicate dementia.
• Memory tools: Those who can successfully use contact lists, calendars, the Internet, phone books, and other tools to remember are likely suffering from normal aging. If the person can’t use these tools successfully, it may be a sign of more serious memory loss.
• Repeated forgetting: To forget a name once is normal, but if the person is reminded of the name but then forgets it again and again, that’s not normal.
• Personality: Though some memory loss is normal with aging, the basic personality still stays the same. If there are changes in the personality—someone who was always calm now has a short fuse, for example—that could be another sign of degenerative brain changes.
• Habits: Those going through normal aging will still stick with their daily habits for the most part, including their normal bathing, dressing, eating, and bill-paying routines. If daily tasks are becoming difficult, it may be dementia.
• Stress and fatigue: Even when an individual is tired, he or she is likely to remember familiar information, such as the names of family members. If while experiencing stress and fatigue, the individual displays out-of-proportion memory problems or emotional outbursts, that’s usually not normal.

Patients and families who notice behaviors that seem unusual and who are concerned about possible dementia should not hesitate to reach out for help. Jami says that though the patient himself may be downplaying the concerning incidences or may be reluctant to admit there’s something wrong, family members may see the situation more clearly, and wonder what to do about it.

Particularly if the patient does not want to see the doctor for fear of losing his independence or receiving a difficult diagnosis that he doesn’t want to face, loved ones can feel paralyzed about how to help.

Jami recommends that families take the individual to their primary care physician if they can, but even if the patient resists at this stage, loved ones can still take action by educating themselves so they may be prepared if things get worse. She suggests breaking down the task into two areas:

1. Online and Print Resources

There are many reputable online resources that have information helpful to families dealing with the early stages of dementia. Jami emphasizes the importance of finding a reputable site, typically “one that is written through a university or a large hospital chain, research center, or physician.”

She refers caregivers to the Alzheimer’s Association website, as it has a wealth of quality information. She also recommends The 36-Hour Day, a guide for caregivers by authors Nancy L. Mace and Peter V. Rabins.

2. Community Resources

Jami emphasizes the helpfulness of support groups, and advises caregivers not to hesitate in joining one, even in the early stages, as it can be so beneficial to realize that other people are struggling with similar circumstances and emotions.

Then she suggests that caregivers look into the availability of local experts, those who understand the disease process well and can help them through it. Though caregivers may not yet be ready to work with someone like this, it helps to be aware of where they are and how to get in touch with them, in case they’re needed down the road.

These individuals are usually known as “care managers,” and can be located through the following organizations:

1. Optimal Aging Advisors
2. Eldercare Locator
3. Aging Life Care
4. A Place for Mom

After a Diagnosis, Don’t Wait to Start Planning

If symptoms get worse and the person is eventually diagnosed with dementia or Alzheimer’s, caregivers should move forward with getting a care manager if they want to do that, and should engage in early planning to prepare for the disease’s progression. Tackling the tough questions early on allows the patient to weigh in on what will happen, and can also give caregivers and family members time to prepare.

This is especially important when considering financial and legal issues. “We highly encourage people not to wait until the end,” Jami says, “because this is something that needs to be taken care of very early.”

She suggests that for things like advanced directives, power of attorney, the living will, and long-term care, caregivers hold discussions early, involving a care manager if needed. It’s important while the patient is still able to contribute to consider ways to preserve their assets, discuss end-of-life care options, and help everyone plan for the changes that will occur later on.

As the disease progresses, costs typically tend to increase. Patients typically need a higher level of care, perhaps that which can only be found in a skilled nursing home. This is when assets will come into play, and that’s why having a good financial plan is so critical.

“Whether it’s through the estate planner or the financial planner,” Jami says, “it’s important to put a good financial plan in place because medical needs are going to arise, and also caregivers and families need to understand what they’re loved one’s wishes are.”

2. When Alzheimer’s Begins to Progress Into the Moderate Stages

During the moderate stages of Alzheimer’s, symptoms change and begin to include more memory loss and confusion, trouble with daily activities involving organization and planning, sleep changes, behavioral changes, and more.

Jami says this stage is usually the most difficult and challenging to deal with “because the person affected by Alzheimer’s understands to some extent what’s going on, but given the brain atrophy and the different things that are happening within that brain, they’re not processing as well, they’re not coping as well, they’re not reasoning as well, and their judgment is altered.”

Support groups are even more important at this time, particularly those that offer caregivers education on how to manage difficult behaviors. Jami says these groups can give you guidance about how to use certain skills like distracting and redirecting:

“When you have a behavior that’s not working well, or someone’s not understanding something, you want to distract them from what they’re fixated on at that point and redirect them to try to improve compliance.” Online resources also offer information that can be helpful in dealing with these difficulties.

Most important is that families accept the fact that the person is changing.

“Getting them to understand the reality that the person diagnosed with Alzheimer’s is in a very different reality from our reality is one of the biggest challenges we have with caregivers,” Jami says. “We do a lot of coaching to say, ‘You have to meet them where they’re at.’”

Counseling can also be crucial at this point, particularly if the caregiver is feeling like she’s doing something wrong.

“It’s just so cruel,” Jami says, “because these caregivers are doing such a wonderful job, but the person diagnosed with Alzheimer’s—their reality is so different from that of the person taking care of them. And it’s hard, so I think counseling sometimes in these situations is underrated. People are resistant to it, but it can really make a big difference in the way that this caregiver looks at their situation and they can realize that they are doing a great job.”

In some cases, medications may also be appropriate to help the patient feel calmer. Jami suggests caregivers be clear with doctors about exactly what’s happening and what the behaviors are.

Caregivers Must Plan for Periods of Respite

When caregiving starts to get more difficult, caregivers must consider “respite care,” a service that cares for a dementia patient for a short time to give the regular caregiver respite.

“A lot of these personal care homes will provide what we call respite care,” Jami says,

“so in other words, say a family member that’s constantly caring for someone with Alzheimer’s needs a break or wants to go on vacation. A lot of the personal are homes will accept someone with Alzheimer’s into their community for maybe a one-month stay or something like that.”

She adds that respite care can also be a good option if the caregiver falls ill or has to spend time in the hospital. For help finding respite care, refer to these tips:

• Ask your care manager for referrals.
• If the patient is a veteran, check with the Veteran’s Administration, as they may offer some assistance.
• Call local assisted living and memory care facilities.
• Check with a local in-home care agency (Medicaid may pay some of the costs of care from a licensed provider). You can use this online in-home care directory to get started.
• Ask the Area Agency on Aging for recommendations. Find your local chapter here.
• Look for volunteer agencies that may be willing to help. “A lot of volunteer agencies will come and sit with someone who has Alzheimer’s so the caregiver can get a break,” Jami says.

Keeping a Loved One with Alzheimer’s Safe in the Home

In the moderate and advanced states of Alzheimer’s, patients are more likely to suffer injury either in the home or while wandering. At this point, caregivers must turn their focus to securing the loved one’s safety in the home. The AA has some good resources on the subject, and support groups can be useful, too.

Jami suggests getting a GPS tracking system for wandering patients. These can be worn on the wrist, but there are some that fit in a shoe, too. These systems can be extremely beneficial in helping to make sure a patient doesn’t get lost.

Wandering isn’t the only concern, however. Jami suggests these tips for creating a safer home:

• Put new locks at the tops of the doors. A patient in the later stages of the disease will not think to address a lock they’re not used to.
• Put a mirror in front of the doorway—it can serve as a distracting device that redirects the patient’s attention away from escaping.
• Disconnect potentially dangerous appliances before like the stove before leaving the home.
• Rearrange the furniture as needed to clear walkways and help avoid falls.
• Take advantage of devices that monitor patient behavior and notify you or emergency personnel if the person falls. Lifeline is one good example.
• Lock up medications.

Financial Safety Tips

Financial risks can also increase as the disease progresses. Jami tells the story of Alzheimer’s patients going into their banks and withdrawing large sums of money that they then spend without proper restraint, simply because they’ve lost the ability to make wise financial judgments.

Since this can be particularly dangerous when trying to plan for long-term care, Jami suggests caregivers take some steps early on in the process to prevent problems.

• When you feel it’s appropriate (when the patient starts to lose judgment), notify the banks of your loved one’s condition, and ask them to contact you or the power of attorney before approving any suspicious withdrawals or other activities.
• Consider setting up a new account for the patient that has enough money to allow them to retain some independence, but not enough to impact them drastically if they make a bad decision.
• Remove all credit cards but one, and contact the company to put a low limit on it. This allows the patient some autonomy with the card, but prevents overspending. Alert the credit card company to the situation, and ask them to keep an eye on any suspicious activity.
• Once the patient can no longer manage paying her bills, intercept the mail, change it to your address, and/or shift everything to electronic payments. That way the patient doesn’t receive the bills and try to pay too much, and the bills remain paid as they should be. This step can also reduce the risk that unscrupulous parties will try to exploit the patient by seeking donations or other payments through the mail.

3. The Final Stages of the Disease

At the final stage of Alzheimer’s, the patient may have difficulty walking or sitting up without assistance. They may not be able to recognize family members, and may need quite a bit of help with daily requirements like eating and going to the toilet.

This is when that early financial and caregiving plan can be particularly helpful. Caregivers can have a hard time coping with what they’re seeing, particularly if the patient needs 24-hour care or nursing home care. “It helps if they know the decision was not really theirs,” Jami says, “and that they’re not to blame.”

If caregivers opt for in-home care, Jami cautions them to check with their doctors on home-care personnel: “A visiting nurse, for example, has to meet certain criteria to be covered under insurance.” She adds that hospice may be an option and it is usually covered by insurance or by government programs.

At this stage, as in all the others, Jami also reminds caregivers that they must remember self-care, particularly counseling at this point. “They’ve been through a very long journey that could’ve taken a decade or more to go through.” Now they have to face the fact that their loved one is dying, which can bring up a number of difficult emotions difficult to manage alone.

Counseling and support groups can also help caregivers manage things they may not have anticipated, such as the inability to keep someone in the home. It can be very difficult to maintain home care in the final stages, and caregivers should not feel guilty for seeking more outside help.