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The single most important consideration in caring for someone with dementia is to ensure that they are treated with dignity and respect. As a result of his or her mental decline, your care recipient may well feel vulnerable and frightened. It is important that your efforts focus on helping your care recipient retain a sense of identity and self-worth.
When caring for someone with dementia, it is critical to keep in mind:
Usually there is some reason for your care recipient's outbursts. If you can pinpoint a cause underlying the behavior, you may be able to prevent triggering future outbursts. Aggressive or violent behavior is usually caused by fear or anxiety - this might be relieved by supportive, loving care.
Dementia will affect physical behavior as well as mental acuity. Your care recipient may lose the ability, for example, to clearly determine colors or distances and time. This loss of physical control may result in the following behavior:
As a general rule, regular compliments to your care recipient on their appearance after they have bathed and tidied up may act as positive re-enforcement.
People with dementia can lose control of bladder or bowel function for a range of reasons. To cope with incontinence, you will need some clues as to its cause. Keep a record of when bladder or bowel accidents occur and any other activity your care recipient may be involved with. Seek your physician's assistance to find out if there is a medical problem, such as a bladder infection, or whether it might be a side effect of a medication they are taking. The incontinence may, however, be solely the result of their dementia.
Remember that even though your care recipient may have lost control over their functions, they can still be embarrassed about their incontinence. This will be a delicate situation, requiring tact and sensitivity. While cleaning up after a bowel or bladder accident can be a difficult and stressful task, try not to lose patience.
Help with Bathing
Bathing and hygiene can sometimes be a difficult experience for your care recipient, who may have developed a fear of water, or who may have forgotten the purpose of a bathtub. He or she might not be able to judge spatial distances accurately and may have depth perception problems, including difficulty in seeing the edge or depth of the tub. You can improve the experience by making sure the bathroom is a safe and pleasant environment. You might want to:
If announcing that it's bath time provokes a negative response, try escorting your care recipient to the bathroom before making this announcement.
Perhaps your care recipient is embarrassed or ashamed about having to bathe in front of, or be bathed by, someone else. Respect their modesty and give them some privacy by letting them bathe in a swimsuit, underwear or with a towel covering them. Allow them do as much of the process as possible, while you provide simple instructions. If your care recipient is exceptionally resistant to taking a bath, don't push too hard. You may have to accept the fact that he or she will not bathe regularly.
Your care recipient may not be able to make appropriate decisions on clothing and you may want to help them dress. As far as possible, it is best to allow your care recipient to retain control over choices of daily life. When it comes to dressing, encourage this self-reliance by providing 1 or 2 options, then laying out the clothes in the order in which they are to put them on. You may have to provide simple instructions or replace buttons with Velcro if dressing is becoming
A person with dementia will not be as concerned with appearance as he or she was before the disease. He may not have the motor control, or indeed the memory, to perform tasks such as combing hair or brushing teeth. You may have to accept some level of carelessness. Do not to push your care recipient to maintain your standards of grooming. You can help your care recipient with grooming tasks by:
- Modeling actions such as hair brushing that your care recipient will be able to imitate
- Having the materials for grooming set up beforehand, in the appropriate environment for these tasks (i.e., comb or brush laid out in the bedroom or bathroom, wherever they prefer)
- Arranging regular haircuts and ensuring that the hair style is easy to maintain
- Using an electric razor when shaving
- If your care recipient likes to wear make-up, select and arrange the materials - keep it simple - beforehand so that she can try to put on the cosmetics by herself
Try to ensure that your care recipient brushes his or her teeth at least twice a day. If your care recipient does not remember how to do this task, you can help by:
As dementia progresses, chewing and swallowing may become more difficult as the dysphasia (swallowing problems) becomes more pronounced. You will need to start cutting food up into small pieces then move to minced foods. Eventually you will need to puree all food. Find out where to purchase thickeners for fluid, as non-thickened fluid can travel down into the lungs instead of the stomach and cause pneumonia.
When feeding, use small spoonfuls and try to ensure that each spoonful is swallowed before offering the next. People with vascular dementia may forget to swallow, and you will need to remind them from time to time. Avoid rushing meals. They should be, as far as possible, a pleasurable experience and an opportunity to spend some quiet time with your care recipient.
Although you may be concerned about leaving your care recipient alone, do respect his privacy as much as possible. Place signs on doors asking people to knock before entering your care recipient's room. Sometimes your care recipient may need help in washing or going to the bathroom. If other people are around, make sure the bathroom door is closed. Be sensitive to your care recipient's sense of dignity and need for privacy.
Let Them Express Their Feelings
It will be common for your care recipient to be frustrated or upset. You will have to be sensitive to these emotions. During the initial stages of the disease your care recipient will likely understand what is happening and may feel inadequate, depressed and alone. They will need your comfort and support. They may want to talk about what they are experiencing. It is important that you listen to them, even if what they're saying is difficult to accept. You may even want to encourage them to talk to you about what's happening.
Once the diagnosis of dementia has been made, it is impossible to predict its course accurately. You will have no way of knowing how long your care recipient will be able to function reliably before the disorder starts to seriously affect memory and judgment. It may be wise to talk about future plans now, while your care recipient is capable of making informed decisions.
Reinforce Your Care Recipient's Sense of Self Worth
As a caregiver you will have to find the ways and means to communicate respect and affection to your care recipient, both for the present reality and for the person he or she was in the past. You can do this by showing affection through appropriate physical contact, taking the time to listen, chat and generally enjoying being with your care recipient. Encourage your care recipient to take pride in his or her physical appearance. Much of our self-respect is bound up in the way we look and in the way other people react to our appearance.
Focus on the Strengths
By focusing on your care recipient's strengths and by encouraging as much self-reliance as possible, you can preserve some of their dignity and self-respect. Avoid situations where they are likely to fail. Find activities and tasks your care recipient can still manage and enjoy. Provide lots of encouragement and sincere praise and remember to let them do things at their own pace and in their own way. Breaking an activity down into smaller, simpler steps can make it easier for your
care recipient to accomplish tasks and enjoy a sense of worth and dignity.
Provide Freedom to Make Choices
Always try to give your care recipient the freedom to make choices whenever possible. There will be times, especially as the disease progresses when your care recipient will be unable to make decisions but it is important that they are continually informed and consulted in matters that concern them. Be clear about any decision they will have to make. Whenever possible phrase a question so that it requires only a yes or no response.
Let Others Know Your Care Recipient's History
If you can provide background information on your care recipient's past and explain the present situation, others will be more inclined to see them as a whole person and not just a walking disorder. Having some sense of a person's background helps others feel more at ease with your care recipient. People with dementia can often remember their past more clearly than the present and often enjoy sharing their memories. You may also want to let people know that your care recipient may act out in ways that may be disturbing. You should emphasize that this behavior is not deliberate.
Have a Care Plan to Follow
Having a printed or written care plan to follow with dates and events makes it easier for others who will help you with your care recipient, allowing you periods of respite from the role of caregiver. A care plan can create the continuity of care that will be necessary to meeting your care recipient's ongoing needs.
- Using Validation Therapy to Manage Difficult Behaviors by Jan Allen
- Management of Agitation Behavior by Richard O'Boyle
- When Your Loved One Resists Care by Richard O'Boyle
- Maintaining Selfhood and Dignity in Patients With Alzheimer's Disease by Nancy Bryce
- Sleep Disorders and Sexual Behaviors from ElderCare Online's Skill Builders