Caring for a Relative Who Has Dementia
If you are having any symptoms or have any questions, please call 811 to speak with a registered nurse 24 hours a day.
What can I do to help my family member?
If your loved one is still in the early stages of dementia, they may not yet require much care. The best thing you can do at this stage is to learn about your relative’s disease and what you can expect as the dementia progresses. It’s also a good idea for you, your relative, and your other family members to plan for the future while your loved one can still participate in the discussions.
If your loved one is in the middle stages of dementia, try to provide a safe environment and keep a daily routine. Read the tips below for ideas about how to cope with new demands and handle some of the behavior problems common in people who have dementia.
Take care of yourself
As the caregiver of a person who has dementia, you must first take care of yourself. If you become too tired and frustrated, you will be less able to help your family member. If you need a break, try the following:
- Ask for help from relatives, friends, and local community organizations.
- Look for caregiver support groups. Other people who are dealing with the same problems may have some good ideas about how you can cope better and how to make caregiving easier.
- Consider respite care. Respite care is short-term care that is given to a person who has dementia in order to provide relief for the caregiver. Respite care may be available from your local senior citizens’ group or a social services agency.
- Consider adult day care centers. They can give your family member a consistent environment and a chance to socialize.
- Community resources are very important. To find out about services in your area, contact the Alzheimer Society of Nova Scotia (ASNS), Alzheimer’s Society of PEI, talk with your primary healthcare provider, Continuing Care or public health department
- The Alzheimer’s Society may be able to help with one on one support, information, referrals, education programs and a number of services for persons with dementia and care givers.
- Social workers find and organize help, including possible financial aid.
- Home healthcare agencies provide the services of nurses, medical social workers, and therapists. They also provide home health aides for personal care.
- Out-of-home services may include adult day programs; mental health services, including support groups for people with dementia and family caregivers; transportation; and nursing facilities.
Dementia will change your loved one’s ability to communicate thoughts and emotions to you. Your relative may not know how to tell you what he or she needs. Your relative may not understand what you want when you ask a question or make a request. This can be frustrating, but the following tips may help reduce stress and improve communication:
- Be positive. Your tone of voice and body language are important. Control your facial expressions. Speak in a pleasant manner and use touch to give your relative affection.
- Be clear. Get your loved one’s attention, then speak slowly and calmly. Use simple words and sentences. If necessary, repeat the information or question until your relative understands. Ask yes or no questions. Avoid giving options when there are none. For example, instead of asking, “Would you like to go to bed?” say, “It’s time for bed now.”
- Acknowledge feelings. If your loved one becomes sad, angry, or upset, don’t ignore it. When you try to distract or redirect your relative, let him or her know that you understand. For example, you might say, “I can see that you are frustrated. Let’s go for a walk.” This validates the person’s feelings and might help him or her calm down.
Your loved one may become agitated for many different reasons. Often, a sudden change in surroundings or frustrating situations can cause people who have dementia to become agitated. Being moved to a new apartment, home, or being admitted to a hospital or nursing home often can cause confusion or agitation. Even getting dressed or giving the wrong answer to a question may cause frustration. Being challenged about the confusion or inability to do things caused by the dementia may also make the person agitated. As a result, the person may cry, become irritable, or try to hurt others in some way.
To help minimize your relative’s agitation, try the following:
- Avoid loud noises and overstimulation. A calm, pleasant environment with familiar faces and objects helps soothe fear and anxiety.
- Set realistic expectations. Expecting too much of your family member can make you both feel frustrated and upset. Let your family member help with simple, enjoyable tasks, such as preparing meals, gardening, doing crafts, and sorting photos. Try to make other tasks less difficult. For example, instead of expecting them to get dressed alone, you can just have your loved one put on one piece of the outfit (such as a jacket) on their own.
- Limit the frequency of difficult tasks. If a particular task is especially difficult, try to limit how often it occurs. For example, if taking a bath or shower causes problems, have them take one every other day instead of every day. Also, you can schedule difficult activities for a time of day when your loved one tends to be less agitated.
- Be positive. Frequent praise for your family member will help them feel better, and it will help you as well.
Dementia often causes changes in sleep patterns. Your loved one may become restless or wander at night. They may confuse night and day, and try to sleep all day. Try one or more of the following if your loved one is having trouble sleeping:
- Establish a routine. Try to keep morning wake-up and evening bed times consistent.
- Make the time of day obvious. Try to make the person more aware of what time of day it is. Place clocks where they can see them. Keep curtains or blinds open so that they can tell when it is daytime and when it is nighttime.
- Limit junk food. Try to control how much caffeine, sugar, and junk food your relative consumes.
- Make sure your loved one gets some exercise every day (not too close to bedtime).
- Limit napping. Too many naps during the day may mean your relative isn’t tired at bedtime.
- Make your loved one’s bedroom peaceful. It is easier to sleep in a quiet room. At night, provide a night light or leave a dim light on. Total darkness can add to confusion.
- Relieve pain. If your loved one has arthritis or another painful condition that interrupts their sleep, ask your healthcare provider if it is okay to give your loved one medicine for pain right before bed.
Sometimes very simple things can help with this problem. It is all right for your loved one to wander in a safe place, such as in a fenced yard. By providing a safe place, you may avoid confrontation. If you can’t provide a safe place for your loved one to wander, try the following:
- Block doors. Remind your loved one not to go out a certain door by placing a stop sign on it or putting a piece of furniture in front of it. A ribbon tied across a door can serve as a similar reminder. You can also try to “hide” the doorknob by placing a strip of cloth over it.
- Use an alarm system. An alarm system will alert you that your loved one is trying to leave a certain area. Your alarm system may just be a few empty cans tied to a string on the doorknob.
- Consider installing special locks. You might have to place special locks on the doors, but be aware that such locks might be dangerous if a house fire occurs. Keep the keys close to the door, and make sure that all other family members know where to find the keys and how to quickly open the doors. Don’t use this method if your loved one will be left home alone.
- Make sure your relative has ID. Make sure your loved one wears a medical bracelet with his or her name, address, phone number, and medical conditions, in case he or she does wander away from home or gets lost. Also, consider purchasing a digital device that uses GPS (global positioning systems) to track a person’s whereabouts.
If hallucinations are not making your loved one scared or anxious, you don’t need to do anything. It’s better not to confront people who have dementia about their hallucinations. Arguing may just upset your loved one. However, if the hallucinations are scary or upsetting for your loved one, try the following:
- Keep rooms well lit. This helps minimize shadows.
- Keep dangerous items out of reach. This is for your safety and your family member’s safety.
- Provide simple explanations. To help calm your relative, you can provide a very simple explanation as to why the person doesn’t need to be afraid, but don’t argue. This may only upset your loved one more.
- Try to distract him or her. You may be able to distract your relative by involving him or her in a pleasant activity.
- Contact a healthcare provider. If hallucinations are severe, contact your loved one’s healthcare provider. Medicine may help.
FOR MORE INFORMATION
Alzheimer Society of Canada
Alzheimer Society of Nova Scotia
112-2719 Gladstone Street
Halifax, Nova Scotia
Tel: 902-422-7961 or toll free within Nova Scotia 1-800-611-6345
Alzheimer Society of PEI
166 Fitzroy Street
Charlottetown, PE C1A 1S1
902-628-2257 Toll-free: 1-866-628-2257
Caregivers Nova Scotia
Caregiver’s Guide to Understanding Dementia Behaviors by Family Caregiver Alliance (04/11/12, http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=391 )
Everyday Life With Alzheimer’s Disease by Alzheimer’s Disease Research (04/11/12, http://www.brightfocus.org/alzheimers/livingwith/everydaylife.html )
Education and Care: Behavioral Challenges by Alzheimer’s Foundation of America (04/11/12, http://www.alzfdn.org/EducationandCare/strategies.html )
Behaviors by Alzheimer’s Association (04/11/12, http://www.alz.org/living_with_alzheimers_behaviors.asp )