Alzheimer's Disease Archives - Dementia Care Books

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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:

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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Keep it simple. It’s not how much you do but the enjoyment you and your relative receive from doing things and being together.
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.
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

November 16, 2021

Helping someone with dementia recognize and interact with you

During the COVID pandemic, recognizing a friend, co-worker, or neighbor wearing a mask has been challenging. While a person’s eyes give us some clues to the person’s identity, it often isn’t enough. We don’t have the benefit of seeing a person’s mouth and facial expressions. And masks often muffle our voices, making it harder to hear and understand.

This is especially true for people with dementia. Laurie has a friend, James, whom she met shortly after his diagnosis five years ago. They would talk, laugh and converse weekly about many things including his diagnosis. During the pandemic, Laurie didn’t see James for the better part of a year. She kept in touch with his wife, who said that while James’ dementia had progressed, he was pretty much his same old self.

When finally Laurie visited James, she wore a mask, as requested. She was excited and nervous to see James, as she wasn’t sure he would recognize her. He didn’t. When his wife said, “James, you remember Laurie, right?” James looked at Laurie quickly, shaking his head no. When she took off her mask and said his name, he recognized her immediately, gave her a hug and they talked for a short time.

This experience reminded us of the importance of giving a person with dementia every chance we can to recognize and interact with us. This becomes harder in the later stages of dementia, but we believe that we never know when a person might recognize us. Keeping these points in mind may help you and your relative or those who work with your relative.

Whenever it is safe and allowed, remove masks, so that you can see each other’s entire face.

When you approach someone with dementia, move and talk slowly. People with dementia need more time to process who you are and what you are saying and doing.

Start by saying the person’s name and then introduce yourself. “James”. PAUSE. “It is Laurie.” PAUSE. “I am so happy to see you.”

Keep the conversation short. Use simple phrases, especially if your relative or friend is in the later stages.

Maintain eye contact as much as possible. This often makes the person more comfortable. Try to be at their eye level, rather than above or below. In some cultures, it is rude to maintain eye contact. If this is true in your culture, be sure you educate those who interact with your relative about this.

Recognize signs that your relative is becoming tired or agitated: wringing hands, facial grimaces, restlessness. If this happens, you might try involving your relative in another activity such as walking in the garden, having a snack, or just sitting together quietly.

As people with dementia become non-verbal, it doesn’t mean they can’t understand what you are saying. Some people with dementia will understand what others are saying long after they have lost the ability to speak. You can find many pointers for talking with your relative with dementia in our book Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, which equips you to address communication challenges throughout the stages of dementia.

Laurie White and Beth Spencer, Dementia Care Books

August 20, 2021

Challenging Behaviors, respite care, Transitions & Hard Decisions

How to get your relative to accept help—so you can take a break

Caregivers 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

August 13, 2019

Challenging Behaviors

Can we go now? Handling repetitive behaviors

Repetitive behaviors such as asking the same question again and again can be stressful and irritating for family caregivers.

Sometimes it feels like your relative with dementia is purposely repeating questions or statements just to annoy you. This is rarely the case. More likely, your relative is trying unsuccessfully to feel a sense of control. Behaviors that surface later in dementia—repeatedly tapping fingers, rubbing arms or thighs, fidgeting with things or pacing back and forth—are also a means of self-comfort.

Responding in a calm, reassuring manner is easier when you understand that physical changes in the brain often lie behind these behaviors. A person may not know that she is repeating herself. He may not know when or how to stop doing something, so he continues spooning his soup bowl when there is no more soup! Your relative may be completely unaware of his repetitive behaviors. You’re the one who may be upset.

What’s behind repetitive behaviors?

Pain. Pain can cause people with dementia to rock, pace or move in other rhythmic ways when they are uncomfortable. A person who is hungry may constantly ask, What’s for lunch? A person who feels cold may repeatedly check closets for a blanket or a sweater.

Depression and boredom. Repetitive actions or gestures may be the only way a person who feels depressed can express herself or cope with certain places, situations or people. Feeling bored or unsure of what to do can prompt someone to repeatedly ask, What do I do now?

Emotions. Your relative may be expressing an emotion such as fear, anger, or anxiety, and need reassurance. Wringing her hands or tapping fingers on a table may be a way that she is trying to comfort herself. She may be feeling vulnerable, especially in a new or unfamiliar environment with unfamiliar people. Being separated from a loved one can cause constant questions such as, Where’s Tom?

Lack of comprehension. Asking What are you doing? may indicate that he doesn’t understand what you or someone else is doing.

Environment. Coats, shoes, purses, and umbrellas can prompt questions like Is it time to go now? And too much stimulation—too many people, too much activity or noise—can trigger statements like Let’s go now. Let’s go now.

What can you do?

Consider these approaches to interrupting or redirecting a repetitive behavior.

Apply our Behavior Detective approach to observe when behaviors occur and what might be causing them.
Respond with your full attention. Sometimes people with dementia no longer know how to get attention and may be using questions as an attention-getting device. Focusing on them and responding to their emotional needs can sometimes break the cycle of repetition for a while.
Respond calmly. Frustration or anger in your voice is likely to escalate your relative’s anxiety. If you find it difficult to conceal your frustration, try remaining silent.
Try ignoring the behavior or questions. If there is no response or reinforcement, the behavior may stop. However, some people may be very upset when they are ignored and become more agitated. For others, ignoring may eventually work. Be patient while you learn what works and doesn’t work.
Try a gentle touch when a verbal response does not help. A hug, holding hands or a gentle shoulder massage can be more reassuring than words.
Try giving the person a note with the answer on it. For example, if the person repeatedly asks When is lunch? When is lunch? write out Lunch is at 12 o’clock. Give the person the piece of paper. Sometimes, having the answer to look at can stop or at least diminish the question being asked repeatedly.

You can find many more suggestions and strategies in the Repetitive Behaviors chapter of our book, Coping with Behavior Change in Dementia: A Family Caregiver’s Guide.

Change your own attitude

Sometimes, despite our best efforts, repetitive questions or movements will not stop. If the behavior is not stressful or a safety threat to the person with dementia, it may help to recognize that this is part of the disease. Changing your attitude to one of acceptance can sometimes help you cope with repetitive behaviors caused by changes in the brain.

Beth Spencer and Laurie White

Dementia Care Books

January 24, 2018

Transitions & Hard Decisions

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

When should your relative with dementia no longer be left alone? There are no easy answers, and the signs are not always clear.

Many people with earlier-stage dementia can manage well in their homes with little or no support. As time passes, and dementia affects judgment and decision-making , they will need more support and assistance to keep them safe. Eventually your relative will not be safe alone.

It’s vital to continually assess safety risks. Consider the following as you make decisions about the safety of your relative. In our experience, these eight red flags can help you determine when your relative may not be safe alone anymore.

Red flag #1: Handling alcohol. It is imperative to monitor alcohol. People with memory loss may not be able to accurately monitor how much they drink. Alcohol can also increase the risk of falling. On the other hand, a cocktail or glass of wine with dinner may be a longstanding habit that brings pleasure to your relative.

You may want to ask your relative’s physician about the appropriate amount of alcohol that is safe.

Red flag #2: Managing medications. As memory and judgment gradually worsen, taking medications accurately can become difficult and eventually impossible for people with dementia.

Ask her doctor if her medications can be simplified. Can some be eliminated? Or changed to once a day? If swallowing pills becomes difficult, are any of the medications available in a different form? A patch or a liquid may be easier.
For people with mild dementia, an automated medication dispenser may be effective.
Avoid conflict by giving her as much control as possible. Ask questions like,“Would you like your medicine now or after breakfast?”

Red flag #3: Misusing household toxins. Pay attention to household cleaners that could be used inappropriately. When Mr. Carter washed his hair with mouthwash, his daughter realized that he no longer understood what the various bottles around the house were.

If you see your relative becoming mixed up about bottles, cleansers, etc., sort them out and lock up anything toxic, e.g., paint thinner, bleach, counter top cleansers, dishwashing soap.

Red flag #4: Smoking. Does your relative smoke or leave burning cigarettes unattended? This can occur when someone has memory loss or becomes confused. If the person has a progressive dementia, unsupervised smoking can become a dangerous problem. Working on ways to decrease or end the smoking habit will become important. It’s not uncommon for people to forget about smoking as their dementia progresses.

Nicotine gum or patches sometimes help some people stop craving cigarettes. At some point, locking up matches and lighters will become important.

Red flag #5: Leaving the stove on. This can become dangerous when people are regularly burning up tea kettles or pans. However, many of us do this occasionally, so it should be interpreted cautiously.

Try purchasing an automatic shut-off electric tea kettle, disabling the stove by removing knobs or turning off circuits, or having an electrician install automatic shut-off timers on stoves and ovens. Many people with dementia can safely handle a simple microwave for a period of time when stoves have become dangerous.

Red flag #6: Unsafe room or water temperatures. Because skin becomes thinner with age, older adults often feel colder than we do and try to warm up the house by turning the heat up too high or turning the air off. This can put a person at risk for dehydration, especially if she is not drinking enough liquids.

Programming the thermostat – day and night – to a temperature that is comfortable for your relative may prevent her from wanting to adjust the temperature too high. Or consider making the thermostat inaccessible by encasing it in a locked plastic case.
Setting the hot water heater to 120 degrees is safer on a person’s fragile skin and can prevent burns.

Red flag #7: Falling repeatedly. Falling makes safety when left alone a problem. In the early stages of dementia, the person may be able to use a cell phone or an emergency response system to call for help, but as the disease progresses she may not be able to remember how to use it. Some newer systems have fall detection built in.

Make sure that tripping hazards have been removed.
Clear pathways of clutter; remove area rugs; increase lighting to help your relative see and negotiate pathways and hallways.
Make sure all stairways have good, solid railings.
Check your relative’s shoes for stability, comfort and non-slip soles.
An occupational therapist or geriatric care manager can help do a home safety evaluation.

Red flag #8: Attempting former hobbies. Some hobbies – hunting, woodworking, cooking, sewing, mowing the lawn, for example – may involve appliances or devices that are potentially very dangerous. Closely monitoring the person’s ability to handle equipment safely becomes very important. At the same time, we want the person with dementia to be able to continue to enjoy hobbies as long as possible as this is part of what makes life meaningful.

Some families find ways to work on hobbies together for a period of time. Jane began doing woodworking projects with her father since he no longer seemed to be safely able to operate his power equipment.
Sometimes it becomes important to remove tools or appliances from the person’s home or to keep them under lock and key.
Guns and ammunition should be locked up. When judgment is impaired, they become a real hazard. With supervision, gun enthusiasts may still be able to use them safely for a period of time, but the risks will increase as dementia progresses.

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

September 17, 2017

Transitions & Hard Decisions

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

August 12, 2017

Dementia Resources

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

May 1, 2017

Transitions & Hard Decisions

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

As 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:

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

April 17, 2017