dementia safety Archives - Dementia Care Books

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

What can you do about anger and aggression in dementia?

Anxiety in people with dementia can often lead to agitation, which can lead to anger, aggression, and situations that can be dangerous for caregivers.

It’s easier to prevent anger and aggression in dementia than to defuse it once it has started. Using observation or behavior logs to identify patterns of behavior can help you figure out what’s causing it and develop strategies to try to prevent it and keep yourself safe.

Common causes of anger or aggression in dementia

Most often anger and aggression in dementia occur during personal care such as bathing, going to the toilet, or dressing. 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, causing her to lash out.
Feelings of frustration, loss of control and fear can lead to angry responses. People who had tempers earlier in life may have more trouble controlling their tempers now. When they feel threatened or that their privacy is invaded or when they are having trouble doing a task, they may be quick to anger.
Feeling that one is being treated like a child, or that control is being taken away, can lead to anger. Most of us like to be in control of our own lives but dementia gradually takes that control away. Even though the disease is causing the problem, the anger is usually directed at the family member of caregiver.
Being told “no.”
A tense or angry environment is likely to prompt similar responses in people with dementia. Despite dementia, people are often sensitive to the “emotional environment” at home or in a care setting and will quickly pick up on other people’s tension or anxiety.
Sensory overload—too much clutter, too many people talking, too much loud television or radio, intense television shows—can overwhelm or frighten people and lead from anxiety and agitation to acting out aggressively.
Poor communication by a caregiver can lead to angry responses.
A fairly sudden change in behavior may have a physical cause. A urinary tract infection can trigger bizarre behavior or delirium. Arrange a medical evaluation to screen for infections, medical illnesses, medication changes or side effects that could be contributing to the problem.

Strategies to try for anger or aggression in dementia

Think about how to give your relative as much control as possible over decisions and situations that make her angry.
Try not to say no. Think of other ways to phrase things.
Don’t argue. You won’t win and this frequently leads to anger.
Do you sound patronizing or condescending? People with dementia are very quick to pick up on tone of voice and feel demeaned by it.
Try to figure out the feeling behind the behavior. Responding to the feeling is often one of the most helpful things you can do. “Molly, you sound so frustrated. I am sorry you are having such a hard time with this.” While you are not solving the problem, Molly knows you are listening to her. “Dad, you seem upset. Let’s sit here together for a few minutes. I will be here to help you. You are not alone.”
During personal care and other tasks, explain step by step what you are doing. “Dad, I’m going to help you take your pants off now.”
Create and maintain a calm, consistent environment.

Staying safe when your relative is angry or aggressive

Call for help if you feel the situation is really out of control or you feel threatened. This might be a neighbor or family member. Call 911 if you feel you are in danger.
Stay calm. Don’t raise your voice.
Don’t argue.
Back off. Leave the room if need be. If you feel threatened, leave the house and go to a neighbor’s.
Don’t get trapped. Keep yourself between your relative and the door so you can escape if you need to. If this is a frequent problem, talk with your relative’s doctor or consider whether it might be time to think about residential care.

Beth Spencer and Laurie White

Authors of Coping with Behavior Change in Dementia and Moving a Relative with Memory Loss

March 27, 2018

Transitions & Hard Decisions

Seven more 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. 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

October 2, 2017

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

Tag Archive for: dementia safety