Tag Archive for: memory loss

13 ways to enjoy the holidays with your relative with memory loss

Holidays bring families together to share and observe cherished traditions. But for a relative with memory loss, the holidays can be challenging—especially as we move into our second pandemic holiday season.

These thirteen suggestions can help you plan holiday celebrations that include your loved one with memory loss:

  1.  Recognize that holidays are not the same as they have been in the past. Gatherings may be smaller. Common feelings of loss, sadness, and anger at the disease of dementia (not to mention covid) may be heightened. Talk with other family members who may be experiencing some of these same feelings.
  2. Give yourself permission to do only what you can manage. Ask family and friends for their ideas on how to make it a safe, enjoyable and manageable holiday.
  3. Try altering traditions, not eliminating them. Help your relative enjoy the spirit of the holidays. Holiday baking, holiday cards, sing-alongs, gift wrapping, being with grandchildren, etc. can be adapted to your relative’s abilities, schedule, and immune system. A short, simple activity is often preferable.
  4. Consider celebrating with your relative before or after the holiday. Celebrating a few days before or after may be more manageable and less stressful for everyone. A holiday is still a holiday wherever and whenever you celebrate it.
  5. Plan smaller gatherings. In smaller groups, the person with memory loss may find it easier to process what is being said and be part of the conversation.
  6. Focus on connection and communication. Equip your family to move and talk slowly with your relative. People with memory loss need more time to process who you are and what you are saying and doing.
  7. Maintain your relative’s routine as much as you can to avoid increased confusion. Try to schedule activities around your relative’s best time of day or at meal times.
  8. Be alert to signs of fatigue and increased confusion. Some people in the early stages of memory loss may retreat to a quiet place such as their bedroom when they feel overwhelmed or overstimulated. If your relative is in the later stages, watch for signs that she may need a break: changes in facial expressions, tone of voice, or behavior.
  9. Help prepare visitors. People who have not seen your relative in a while will appreciate knowing what to expect and do while being with your relative. Say something like, “I thought it might be helpful for you to know how mom is doing before you see her. Mom is having more problems remembering and recognizing people. Although she may not recognize you, I know she will appreciate your company, and so will I. Please don’t think it is strange when I introduce you. Sometimes this helps her be more relaxed.” Remind them that compassion is key to understanding your relative’s changing brain and behaviors.
  10. Think through where your relative is most comfortable. Taking the holiday celebration to your relative may be better than taking your relative to the holiday celebration. We know that as dementia progresses, routine and familiar environments become increasingly important.
  11. Keep it simple. It’s not how much you do but the enjoyment you and your relative receive from doing things and being together.
  12. Keep your relative covid-safe.  Older adults are more vulnerable and people with advanced dementia often have impaired immune systems as well.  Think carefully about how to keep your relative safe, whether it is with a very small gathering, wearing masks, meeting outdoors, making sure everyone is vaccinated or whatever measures you can bring to the holidays to ensure safety.
  13. Ask family and friends to get tested before the gathering, even if they are vaccinated. Covid tests are available at some clinics as well as pharmacies such as Walgreens, Target, Rite Aid and CVS.

We wish you and your relative with memory loss a warm, safe, holiday season full of meaning and connection.

Beth Spencer and Laurie White

Dementia Care Books

respite care can be lifesaving for caregivers
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How to get your relative to accept help—so you can take a break

respite care can be lifesaving for caregiversCaregivers need breaks. Respite care can happen many different ways. You might get a break by hiring a home care worker. Perhaps other family members can step up and rotate time with your relative. Taking advantage of adult day programs or temporary stays in a residential setting is another possibility.

All of these possibilities rest on getting your relative to agree to new people, routines, and places. Without agreement, you won’t get that break.

It’s not uncommon for people with dementia to refuse help of any kind. The secret to getting someone to accept help is to understand and address common and possible reasons for not accepting help. For example:

“She’s just stubborn.” This common statement usually indicates that the person with dementia is used to being in control of her own life and is still trying to be independent.

“I can take care of myself.” This sounds like denial, but has more to do with changes in the brain that result in the person not understanding things accurately such as how much assistance she needs.

“I don’t need any help.” When people develop cognitive changes, they may feel humiliated. Admitting that one needs help can be a very hard thing to accept for both the person with dementia and their care partners—especially after decades of independent living.

“When somebody helps me, I feel useless.” Feeling useless or worthless can lead to shame and make people very resistant to accepting help.

“I’m saving money for a rainy day.” For older people who have spent their whole lives saving money and being thrifty, the idea of spending money on help, especially when they think they don’t need it, may be very difficult to accept.  The idea of a sliding scale or “charity care” makes them feel uncomfortable.

“I don’t want strangers in my home or knowing my business,” or “I don’t trust anyone to come in my home.” Inviting strangers into one’s home is a big step, especially for people with a strong desire for privacy. Sometimes day programs are a better solution for that reason.

Are you the problem?

Ask yourself, are you the one getting in the way of accepting help? As family members we may have some of the same feelings and hesitations as our relatives with memory loss. Discussing this with a professional can help you sort out your emotional issues and decide how to proceed.

How to get help even when your relative refuses it

Arranging respite care by bringing help into the home for the first time can be very troubling to the person with dementia. She may feel insulted, humiliated or angry or a combination of these feelings. Here are ways to make the process easier:

Look for a familiar person to step in to help—a neighbor, friend, housekeeper or gardener who can become a part-time companion. This can happen gradually and subtly and your relative may not notice the change in role. The person with dementia may not know they are being paid.

Present the change as helpful for you rather than your relative. Bringing someone into the house IS help for you. Respite care gives you some peace of mind and may relieve you of some of your responsibilities. Mary’s mom Karen lived with her and her husband. For many months Karen was fine staying alone while Mary was at work. However, Mary began to get anxious phone calls from her mother. Sometimes when she got home her mother would say, “Where have you been? I’ve been so worried!” Mary took this as a sign that Karen needed someone with her and hired a home care agency a few hours a day.

She told her mother, “Amanda will be coming in a few hours while I’m at work. She’ll be helping me with laundry, cleaning, shopping and cooking, but she’s available to hang out with you if you want company. You don’t have to interact with her though if you don’t want to. She’s coming to help me.” Initially Mary made sure she was at home when Amanda came and made sure that Amanda understood the plan. Karen accepted help on these terms and eventually enjoyed doing things with Amanda. After several months she also allowed Amanda to help her with bathing.

Give her as much control as possible.  When people feel like they are losing control of their lives, they often dig their heels in.  Think about how to help her feel she has some control:

  • Offer choices whenever possible.
  • Involve her in the interviewing and decision of hiring home care.
  • Make it feel like she is helping you. She is!

Beth Spencer and Laurie White

Authors of Moving a Relative and Other Transitions in Dementia Care and Coping with Behavior Changes in Dementia

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Understanding brain changes is key to compassion

Pat’s dad can’t remember from moment to moment that he has a brain disease affecting his ability to live alone.

Sara can get herself out of bed—but doesn’t know what to do next. She needs someone to prompt her through every step and help her get them in the right order.

These are frustrating situations for people with dementia and their care partners. Understanding more about brain changes caused by dementia can help us respond with compassion and patience.

Dementia changes the brain, and those brain changes also affect a person’s thinking and ability to function. The type of dementia will affect how and when these changes occur. Many affect what we call “executive function”—the cognitive areas that let us get through our days, perform routine tasks, make decisions and solve familiar problems. When these functions are impaired, the result may be inability to think clearly, do routine tasks, and make good decisions.

Most troubling can be anosognosia, or lack of awareness in the presence of a neurological illness. Pat’s dad can’t remember that he has a brain disease. He doesn’t see any problem with living alone and resists the idea of moving in with Pat.  It’s hard on Pat, too. She remembers a father with good insight into his life and situation.

“A person can abstractly understand that they have an illness, but not be aware of how it is affecting them,” says Mariana Longoria Ibarrola MD,  a brain health expert who contributed a chapter to our book, Moving a Relative and Other Transitions in Dementia Care. “Loss of insight into one’s own deficits is often baffling to caregivers who are used to having honest conversations with their loved ones.”

Lack of insight may lead to denial, inflexibility, or irresponsibility. Care partners frustrated by a person’s lack of insight might confront or blame.  All of these can lead to conflict. (Find ways to handle anger, aggression and conflict here.)

Understanding the “why” of these behaviors helps us respond in caring and appropriate ways. Knowing what is happening in the brain can help us use the powerful tools of empathy and forgiveness—and remember not to take things personally.  Then Pat can approach her father and decisions that need to be made from a different perspective.  Sara’s family can learn how to coach her instead of blaming her for being “lazy” or “resistant.”

Remembering that the disease is talking helps us stay calm, warm, and supportive. George and Harriet called his disease Mr. AD.  When things became challenging, one or the other would often say “That’s Mr. AD interfering again.”

Changes in the brain are behind all of the changes and stages of dementia. We love the way George and Harriet let “Mr. AD” take the blame instead of each other. Our books Coping with Behavior Change in Dementia and Moving a Relative and Other Transitions in Dementia Care offer many more ways to cope with “Mr. AD”.

Beth Spencer and Laurie White

Dementia Care Books

 

Seven more red flags: when your relative with dementia shouldn’t be alone

how to know when your relative with memory loss should be left alone

When should your relative with dementia no longer be left alone?  There are no easy answers, and the signs are not always clear. Here are seven more red flags that can help you determine when your relative may not be safe alone anymore. (We offered eight red flags in another blog post.) As you make decisions about the safety of your relative, consider these seven additional flags.

Red flag #8: Getting lost. Does your relative leave the house alone?  Go for walks?  The Alzheimer’s Association estimates that about 60% of people with Alzheimer’s disease will “wander” at some point in the illness (which really means that they get lost, often in a familiar place). If your relative is going out alone, it would be good to look at safeguards.

Individuals who are afraid to leave the house may be at risk in a fire or another emergency.  If your relative talks a lot about going home or leaving, she may be at risk for getting lost even if she has not walked out to date.

  • The Alzheimer’s Association and MedicAlert co-sponsor the Safe Return program, a 24-hour emergency response system that operates nationwide.
  • Consider a GPS-based tracking system. The Alzheimer’s Association sponsors one called Comfort Zone in some locales. Project Lifesaver is an international GPS-based tracking system that may be active in your area. 

Red flag #9: Leaving the house at night.  Some people in the later stages of dementia get days and nights mixed up and may be up and dressed in the middle of the night.  If this is becoming a problem or if your relative has ever left the house at night, it is important to think about supervision at night. If she is alone nights and has left the house, she is probably not safe alone at night.

  •  If other people are in the house, try securing the doors with an alarm system, a lock high on the door, or a simple door-securing device designed for children—all available online and in stores.

Red flag #10: Opening the door to strangers.  What does your relative do if someone rings the doorbell?  Does she open the door to strangers?  As people with dementia gradually lose the ability to make safe/good decisions and judgments, the potential for danger increases if she is likely invite a stranger in or give the person money.

  • For some people, a large sign on the inside of the door that says “Do not open the door to anyone,” solves this problem for awhile. And a sign on the front of the house that says “No solicitations” may decrease the number of sales people knocking on the door.

Red flag #11: Giving money away.  Mail, phone, and computer solicitations can be dangerous for individuals with poor judgment.  Individuals with dementia are at high risk for financial exploitation from strangers or relatives.  Sometimes it is a matter of making donations, either giving small amounts repeatedly or giving large amounts. Repeated credit card purchases can lead to financial difficulties.  Others become addicted to internet gambling.

  • Consider limiting access to money or leaving a small amount in a checking account for the person to use.
  • If mail is the issue, one approach is to forward mail to another address or get a PO box and have someone else in the family monitor it.
  • Phones can be unlisted, although solicitation calls may still get through. Sometimes just turning the ringer off is enough to keep the person from answering, although this may be a problem if family wants to call or your relative is waiting for a call.
  • Computers may be more difficult to monitor if your relative is still able to use one. Some families have limited internet access or installed child safety programs. Others monitor the computer history daily to make sure that their relative is accessing safe sites and not gambling or giving away money. Watch for and delete suspicious emails containing attachments that infect the computer when opened. Often they appear to come from friends and relatives.

Red flag #12: Responding to emergencies.  Would your relative know what to do in an emergency, say, a fire in the house?  This is an important question to ask.  However, a person who can answer correctly may not actually be able to do what’s needed.  Ask her to demonstrate calling 911, leaving the house and going to the neighbor’s, using the fire extinguisher, etc.  If she is not able to respond appropriately in an emergency, how much risk are you as a family willing to tolerate?

  • Installing a phone with important numbers programmed in and photos or large words on the buttons may help your relative use the phone independently for longer. 
  • Post large font lists of important phone numbers near every phone or in key locations.

Red flag #13: Calling frequently or exhibiting a lot of anxiety.   This is often a sign that your relative is feeling anxious and is looking for reassurance.  And why not? It’s frightening to forget important pieces of information that helps you understand what you are supposed to be doing!  Anxiety and a need for reassurance  may lead to safety risks such as leaving the house or inviting strangers in.

  • This may be a point at which you need to think about increased supervision or a companion.

It’s hard to strike the right balance between being over-protective and ignoring signs that your relative is at increased risk.  And, of course, family members don’t always agree about how much risk is tolerable.  It can be helpful for families to talk occasionally together and assess how their relative is doing with each of these potential safety issues.

If you see lots of red flags, it may be time to consider relocating your relative with memory loss to residential care. Our book  Moving a Relative and Other Transitions in Dementia Care can walk you through the process.

 

Beth Spencer and Laurie White

Moving mom: Surviving the hardest day of your life

“The day I moved my mom was the hardest day of my life,” Harriet told us. She had been able to sustain her mother, who has dementia, in an independent apartment by spending increasing amounts of time with her and hiring help from a home care agency. However it was taking a toll on Harriet, her husband, and her three young children. They considered moving her mom in with them, but she was terribly restless at their house and had walked out the front door and started down the street more than once.

Finally Harriet realized she would have to move her mother. She carefully evaluated the options and the finances and made a decision. She had promised her mom she would never move her to a nursing home and now found that she had no choice.

Moving a relative with memory loss into residential care is an extremely difficult emotional task. Sometimes families have doubts for many years about whether relocation was the right decision. This article helps you understand why it’s difficult and offers some tips to make the day go more smoothly for both you and your relative.

Why is it difficult?

  • Media depictions of long-term care. Abuses in nursing homes or assisted living facilities are headline grabbers. It is a rare story that features the millions of caring, positive staff, the innovative programs and the happy moments of life in residential care.
  • Wedding vows that include ‘in sickness and in health, ‘til death do us part.’ Many spouses feel they are violating their marriage vows by moving their partner to residential care.
  • “My mother cared for me. Now it is my turn to care for her.” Raising children and caring for a parent with dementia are not equivalent, for many reasons, even though some of the tasks are similar.
  • Old promises. Unfortunately, we can never predict exactly what life will bring, and diseases such as Alzheimer’s or small strokes are among the things that no one wants to think about. We may have made promises that we simply cannot keep.
  • Family or friends who criticize. Sometimes people around us reinforce the guilt and pain with insensitive comments, or with their beliefs (even though they are not the ones providing 24-hour care). You are the only one who knows what you can or cannot do and what is best for your relative AND you.
  • Moving symbolizes the decline of the person. For many family members, this move is a very powerful symbol of the disease progressing and the person slipping away.
  • Feelings of failure. Many families feel their relative is getting worse because they have not tried hard enough. But many forms of dementia worsen over time, despite our best efforts.

Keeping the following in mind may help you cope with your feelings on moving day and beyond.

  • You are not alone. Most families find this one of the hardest, most painful decisions they have ever made.
  • There are no clear rights and wrongs when it comes to the care of a person with memory loss. If you weigh the pros and cons of various alternatives, you will probably find that there is no totally positive outcome. You may feel you are making the least negative choice of all your options.
  • Know that caregiving does not end at the door of the residential care setting. You are still a caregiver, though your tasks may be different. Also, be aware that stress levels do not necessarily decrease with a move. You may find that you are still stressed, but the stresses are different.
  • Your relative’s adjustment may take months. If you have moved in the past, you know that it can take a long time to adjust to a new place and new people. It commonly takes a person with memory loss longer to adjust to living with others in an unfamiliar place and a new routine. Give it time.
  • “No one can care for her as well as I have.” Caregivers often say this, and it’s often true. You won’t find one-on-one care in residential settings. On the other hand, some people with memory loss actually function better and feel better in a setting with more people and activities, and when caring, consistent staff are available.

You may feel overwhelmed and sad the day you move a relative. Here are some ways to make “the hardest day” a bit less difficult:

  • Ask a friend or relative to come along for the move. Although the residence’s staff will help you and your relative get settled, someone familiar can be comforting. Harriet’s friend Gladys was able to chat with Harriet’s mother, answer her questions, walk around with her, and generally engage her. Harriet had all she could do to handle the arrangements and cope with her own feelings.
  • Dedicate the entire day to moving. Although the physical move-in may not take all day, you may find that getting your relative settled may require more of your time and attention than you planned. If possible, don’t schedule other appointments.
  • Ask for privacy if you need it. As Harriet was putting away her mother’s things, she became tearful. She was very appreciative when the move-in coordinator asked if she would like to go to the family room for some privacy. After a few minutes by herself, she was able to return to her mother’s room and continue moving in her mother’s clothing and personal items.
  • Ask for assistance with your departure. It is very common to be concerned about how to leave your relative on the first day. Staff can be quite creative in supporting you. When Harriet’s mother insisted on going with her, a staff member asked them to join her for a cup of coffee. The staff person engaged Harriet’s mother in conversation and as she began to relax, Harriet excused herself, saying she would be back shortly, and left for the day.
  • Plan something to do after you leave your relative at her new residence. Take time for yourself during the transition to a new era of caregiving. You have spent a great deal of time and energy caring for her and planning this move. Now plan something you will enjoy—a bath, dinner with a friend, a walk, etc.

Moving a relative with memory loss is the end of a long process of research and preparation. You can find much more about the steps in the process in our book, Moving a Relative and Other Transitions In Dementia Care. 

Beth Spencer and Laurie White 

Visiting the dentist when your relative has memory loss

Memory loss and dementia can make dental care difficult. In the early stages of memory loss or dementia, most people continue to take care of their teeth and brush regularly. As dementia progresses, however, they may not remember to brush their teeth or recognize the importance of good oral hygiene. Eventually they may refuse to have someone put a toothbrush in their mouth or remove their dentures.

Good mouth health may be lost in this struggle. That’s unfortunate, because good mouth care is essential to healthy teeth, gums and overall health in elders. With healthy teeth and gums, eating is more enjoyable and tooth decay and loss are avoided. Without regular brushing, people are at risk of infections, chewing problems, weight loss and increased vulnerability to other health conditions.  Risks are especially high for people with chronic illnesses such as diabetes, or whose medications cause dry mouth, making it uncomfortable and sometimes painful to chew and swallow food.

A dental professional can be an important partner in keeping your relative’s mouth healthy.

Partner with a professional

While your relative’s dentist will be a familiar face, he or she may not be right for your relative. Although many dentists care for older adults, they may not be trained or experienced in providing dental care to people with dementia. Call some of the assisted living homes and nursing homes in your area and ask for the names of the dentists who see their residents with dementia. Your local dental society may also be able to furnish names of dentists who work with people with memory issues—who know, for example, that giving instructions one step at a time will help people who have difficulty processing a whole sequence. Dentists and dental hygienists who work with special needs children often are good with people with dementia.

It can help to develop a dental care plan for your relative shortly after the diagnosis of dementia. Make an appointment for a thorough check-up to identify any problems that need attention—gums, broken or missing teeth, infection, etc. Ask your dentist about how often your relative will need dental visits.

Especially if your relative is struggling with mouth care, schedule professional cleaning appointments as often as you can, for as long as you can. A dentist or dental hygienist is able to examine and clean teeth and gums in a way that you or your relative might not be able to.

Before the dental appointment

  • Notify the dentist ahead of time about your relative’s diagnosis to make sure the dentist is comfortable and qualified to care for your relative.
  • Tell the dentist if your relative is able to maintain her own dental care or if she needs reminders or assistance.
  • Report any concerns that you or your relative might have: pain, tooth decay, irritated gums, etc.
  • If your relative will be seeing a dental hygienist, ask about her experience with patients who have dementia.
  • Listening to calming and favorite music may help your relative relax during a dental examination. Some dental offices will provide an ipod® and ear buds for patients who are nervous or tense during examinations. If not, ask if you can bring one. If your relative needs assistance turning the device on, ask whether the office staff can help or you need to do this before the dentist starts the examination or procedure.
  • If dry mouth is a concern, give the dentist a complete list of medications and ask if any could be causing dry mouth. Ask for products that can help relieve symptoms.
  • Tell the dentist about any dementia-related symptoms that might occur during the appointment: inability to report symptoms or locate pain, restlessness, inability to follow instructions or answer questions, etc.
  • Ask the dentist about the expected length of the appointment. If you are concerned that your relative might be unable to sit in the dental chair for the required length of time, ask if the needed procedure can be completed in two appointments. Some dentists may suggest a mild sedative for patients with dementia when a lengthy or invasive dental procedure is necessary. Consult your relative’s primary care doctor about the dentist’s recommendation.

On the day of the appointment

  • Avoid possible wait time by calling ahead and asking if the dentist is on time.
  • Consider how long in advance to tell your relative about the dental appointment. If you think advance notice will cause her to be anxious, consider telling her the day before or the day of the appointment.
  • Ask the dentist if you can stay in the examination room during the procedure if you think your presence will help calm your relative.
  • After the appointment, praise your relative for a job well done. Prepare for your relative – and you – to be tired, as it is likely a great deal of energy went into preparing for and getting through the appointment. If possible, try to plan the rest of the day to be quiet.

Grace began to notice that her husband Otto was not brushing his teeth regularly. One day he began rubbing his jaw and wouldn’t eat. Grace looked in his mouth and saw that his gums were swollen and red. She was worried about getting him to the dentist and how he would do once he was there. She called the dentist, explained the situation and told the dentist that Otto had Alzheimer’s disease. She cautioned that Otto might not be cooperative. Otto did quite well during the abbreviated appointment. Grace felt that the dentist was more comfortable because of the background information she gave him.

More information on oral hygiene and strategies to try to keep your relative’s teeth and gums healthy can be found in our book, Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, available at dementiacarebooks.com.

Beth Spencer and Laurie White

When people can’t speak, behavior speaks for them

Behavior in people with dementia is a form of communication. When it’s no longer possible to express feelings through words, behavior speaks for them.

As dementia progresses, your relative may be unable to find the right words to say what she wants to say or ask. She may lose her train of thought or withdraw from conversations and social events because she can’t keep up or comprehend what other people are saying. And multiple conversations, loud noises or activities can be overwhelming. We knew one woman who would hold her head and moan whenever there were too many people in the room. Without using any words to describe the problem, she made her feelings perfectly clear!

The bottom line is: behavior is the language to learn as your relative with dementia loses communication skills. Pacing, wringing hands, moaning, are telling you something. Likewise, angry outbursts, anxiety, or aggression.

Learning to observe behaviors can help you understand what is behind them. When you understand the root cause of a particular behavior, you can try various strategies to address it. We call this the Behavior Detective approach. You can learn more about how to practice it here and here.

What are these behaviors?

Anxiety appears to increase among many people as they grow older. It’s easy to understand why your relative might be feeling anxious. Imagine not being able to hold onto memories or keep track of what’s happening, to have the world gradually become an unfamiliar, confusing and unpredictable place. Anxiety is not the same as anger, but especially when untreated, anxiety can lead to agitation, which in turn may lead to anger and aggression.

Agitation expressed through behaviors such as pacing, wringing one’s hands, crying or making loud repetitive noises, or trying to go home can indicate distress. Physical illness can cause or increase agitation. Many of us are anxious, agitated or irritable when we are sick and this is even more pronounced in people with dementia.  Pain can cause agitation. Sitting too long can cause it! Both anxiety and agitation can be a side effect of medications or changes in medications. Being tired, bored, frustrated, needing to go to the bathroom—all of these can trigger agitation.

Anger and aggression can be caused by the disease or by untreated depression.  People who had tempers earlier in life may have more trouble controlling their tempers now, especially when they feel threatened or are having trouble doing a task. Loss of control is another trigger. We like to be in control of our lives and schedules. Dementia gradually takes that control away. Feeling that one is being treated like a child or that control is being taken away can lead to anger. So can being told no.

Bathing, dressing and going to the toilet can be ground zero for anger and aggression. Frequently the person misunderstands the situation. She may feel threatened by someone trying to remove her clothes or touch her private areas, or feel humiliated that she needs help.  This often leads to feelings of frustration, loss of control and fear….which can lead to anger. Poor care partner communication—using too many words, a condescending tone, or approaching a person out of a person’s range of vision—can lead to angry responses.

Those angry responses are usually directed at the family member or caregiver. What can you do? Work on prevention! After a certain point, the person is probably not able to control his or her behavior. It will be up to you to observe the behavior, try to find a pattern, and then craft a way to respond that lessens or prevents anxiety, agitation, anger, and aggression. Your career as a Behavior Detective is beginning.

Beth Spencer and Laurie White

Why we wrote “the red book”

writing the red bookOur “red book” on coping with behavior change in dementia was published in the early 1980s—a time when people who cared for someone with memory loss had few resources.

Unfortunately, when these energetic, courageous and wise folks faced repetitive actions, agitation, incontinence, sleep problems, and other behavior changes in their relatives, the primary recommendation from professionals was medication. It was almost a knee-jerk response: Problem, medication. Another problem, increase the dosage. And so on.

While medications were sometimes necessary, we viewed them as a last resort.  Side effects could be serious, and sometimes medications could make care even more difficult.

We always recommended that caregivers and professionals try non-pharmacological approaches first, because we had seen so many instances in which using strategies other than medication actually made care easier. We recommended that caregivers use systematic problem-solving to analyze the situation (we call it becoming a behavior detective), understand what is causing the distressing behavior and develop responses that target the underlying causes.

For example, a nursing home resident was being sedated because of his agitation in the middle of the afternoon.  He would pace the halls, knock on doors and generally appeared very worried.  Medication made him drowsy and much more confused and he started falling. His family requested that the medication be stopped. When staff and family investigated possible causes of the behavior, they found that he was hungry and tired by midafternoon.  A light snack and encouragement to rest in his recliner calmed him and most of the agitation disappeared.

In the 1980s this approach was rare.  With funding from the State of Michigan, we worked with our colleague Anne Robinson to develop Understanding Difficult Behaviors, a manual to help families understand possible causes of common behavior changes at various stages of memory loss, so they could respond more effectively without resorting to medication.  Over the years it became known as “the red book” and was used by thousands of professional and family caregivers throughout the world.

After 26 years in print, a new “red book” was created by Beth Spencer and Laurie White aimed particularly at family caregivers, though many staff and facilities are using it as well.  Coping with Behavior Change in Dementia: A Family Caregiver’s Guide is still red, and it contains many more case examples and additional behaviors and strategies.  Coping includes new sections on physical intimacy and sexual behaviors, challenges and strategies for mouth care in people with dementia as well as a glossary, an updated introduction to dementia and an extensive resource list.  We’re pleased that one of our readers calls it “a ‘must have’ book and guide for anyone facing dementia as a caretaker” and we hope that you too will find it a useful resource for your family.

Beth Spencer and Laurie White

How can an ombudsman help my relative and our family?

An ombudsman promotes and protects the rights of residents of nursing homes, assisted living and small board and care homes. When a resident has Alzheimer’s or another type of memory loss or dementia, their focus is on keeping everyone safe.

This is especially true when residents are experiencing behaviors that are challenging.  When a relative with memory loss experiences challenging behaviors—agitation, for example—in your home, your family is the one most affected. When your relative lives in a community, those behaviors can affect others. As well, your relative may be affected by someone else’s behavior. This is a tricky situation. Enter the ombudsman to help sort it out.

Charlie’s wife Lee, a resident in an assisted living’s memory care community, was in the advancing stages of Alzheimer’s disease. She began to be verbally abusive to residents who “were sitting in her chair” or “in her way” as she walked down the hallway. The staff had difficulty managing her behavior and protecting the other residents from her loud verbal assaults.  Another resident’s family filed a complaint with the Ombudsman’s office about Lee’s actions towards her mother. After observing Lee’s behavior, the Ombudsman met with the Director and Charlie to develop a plan of care for Lee. The plan included training staff on how to approach and respond to Lee when she was agitated. The Ombudsman requested staff to communicate and document Lee’s behavior daily. After a few weeks, Lee appeared to respond more favorably to staff and other residents.

What is an Ombudsman?

An Ombudsman is the official who is responsible to ensure that residents are safe and have the rights that are required under The Nursing Home Reform Law of 1987. This law ensures that nursing homes “promote and protect the rights of each resident.” In most states, this law is extended to residents who live in assisted living and small board and care homes.

What does an Ombudsman do?

The primary responsibility of Ombudsman programs is to ensure that residents in long-term care communities—nursing homes, assisted living and smaller board and care homes—have quality of life and care that is needed. An Ombudsman does this by responding and resolving complaints that are received from consumers, usually residents and family members.  An Ombudsman’s advocacy efforts are based on the belief that residents who live in long-term care facilities have the same rights as those who live in the broader community. Ombudsman programs are often referred to as the ‘watch dog’ for long-term care residents.

How do I find an Ombudsman in my area?

To locate your state or local office, contact the National Citizens Coalition for Nursing Home Reform. Or you can search for the Ombudsman program in your area by state or county, for example, Michigan Ombudsman or Los Angeles County Ombudsman. Contact information and responsibilities can also be found on a poster that residential care communities are required to post in their facility.

What kind of things can an Ombudsman help with?

When a resident or a resident’s family have not been able to resolve an issue or concern ‘in house’, a complaint can be filed directly with the Ombudsman program, who will then investigate and attempt to resolve the reported issue. The Ombudsman office can tell you the type of complaints that are handled and what has been filed for facilities in the area. This can be useful information for you as you choose a place for your relative. It can also be helpful to monitor this list once your relative lives in a facility.

The services offered by Ombudsman may vary from state to state. There is no fee for Ombudsman services. Generally speaking, the Ombudsman office can help you:

  • Resolve concerns or issues regarding the quality of care for your relative or other residents
  • Investigate suspected physical, emotional or mental abuse or neglect
  • Investigate possible financial abuse
  • Investigate inadequate staffing or training for the level of care needs of the residents
  • Discuss and resolve a grievance or issue with staff and family members by attending a care planning meeting
  • Provide educational materials to help understand and clarify resident rights as well as policies and procedures for long-term care facilities.

When situations are complex and feelings are running high, an ombudsman offers a way to help sort things out. For families of people with memory loss, this can be a real lifeline.

Beth Spencer and Laurie White

 

9 signs it may be time to move your relative with memory loss

move relative memory losAs people move through the stages of dementia, more dementia care is required. Some people in the early stages of memory loss recognize their need for more assistance with personal care and activities. However, many other people with memory problems don’t, because their insight into their own behavior and needs has been impaired due to brain damage caused by Alzheimer’s disease, small strokes, or similar illnesses.

That means it’s usually the family of the person with memory loss who will recognize the need to move, find a place, and make the final decision to move a relative. Our book Moving a Relative and Other Transitions in Dementia Care can help you think about the issues involved in moving a relative to residential care, and give you practical ideas for making this an easier process.

But how do you know when it’s time to consider a move? Although there are no magic signs to tell you “this is the right time,” care partners often move a relative with memory loss to residential care for one or more of the following reasons:

  1. It is no longer a one-person job and no other family members are available.
  2. The care has become too overwhelming and exhausting, frequently due to incontinence or being up at night.
  3. Your relative with memory loss is no longer safe in her current residence.
  4. You are unable to keep up with both family and work responsibilities.
  5. Emergency and crisis situations for you or your relative have arisen.
  6. You or your relative has become ill or injured.
  7. The current level of services is not enough, is too expensive, or is too difficult to arrange and sustain.
  8. Your relative no longer recognizes her home or family.
  9. Everyone is telling you that it’s time to move your relative.

If you and your family are having one or more of these experiences, it may be time to start investigating other care options, including residential care homes. Even if none of these things is happening in your family, advance planning can give you the widest range of alternatives. You may find that selecting a place gives you peace of mind, even though you may not need it for a long time.

Many kinds of care are available, and your choice may be complicated by the fact that names and licensing categories of residential care vary from state to state. Your Area Agency on Aging (find yours here) can help you sort out what kind of care you are looking for and what it is called in your area: skilled nursing, assisted living, a small group home or some other arrangement. They can also help you clarify whether you need to find a general setting for older adults, or a setting that is specifically designed for people with memory problems or dementia. When you have narrowed the field, you can start contacting residential care homes that you think will meet your family’s needs.

Moving a Relative and Other Transitions in Dementia Care offers a useful worksheet, “Choosing a Residential Care Setting: Things to Look for, Questions to Ask.” Among the criteria it helps you evaluate are the environment, the cost, staffing and activities, medical care, discharge plans and care plans, family programs and support, and end of life care. This tool from California Advocates for Nursing Home Reform can help you evaluate skilled nursing homes.

Moving is not easy! Our book can guide you through the challenging process of visiting prospective care residences, talking to your relative about the move, planning and making the move, coping with after-move reactions…and it will reassure you that yes, you are doing the right thing.  Our goal is to help you make a choice that works for everyone, and helps your relative have a happier, more engaged life than before.

Laurie White and Beth Spencer

Authors, Moving a Relative and Other Transitions in Dementia Care and Coping with Behavior Change in Dementia: A Family Caregiver’s Guide