Coping with Dementia

Dementia can be one of the most difficult aspects of caregiving. Watching a loved one succumb to confusion, forgetfulness, agitation, suspicion, and sleep disturbances is wearying and trying to mitigate its effects – sometimes annoying, and sometimes dangerous – seems an impossible task. Here are four strategies to apply to your particular caregiving situation.

Use routine to structure day
Going through the same routine for daily or weekly activities can help in a number of ways. For the caregiver, it gives a sense of control and order to the day (at least, most days). And for the person receiving the care it helps to keep them better oriented to time, fosters independence on some tasks, and helps to decrease frustration. Some tips for developing a routine include:

• Use past routines to help develop yours. If your parent or partner always showered in the morning, consider bathing in the morning.

• Allow sufficient time for tasks.

• Use “good times” of the day for more complicated tasks. If the person suffering from dementia is clearer-headed in the morning, for example, this may be a better time for a larger meal or for visitors to come by.

• Simplify routines as much as possible, breaking them down into the same small steps each day. Giving one instruction at a time can help to keep things running smoothly.

• Use external cues to help emphasize the routine. Lay the toothbrush out on the counter each morning. Play the same music during meals, or before going to bed. Sit in the same chair before putting on shoes to go out. You can also use pictures to label things if reading is becoming difficult.

Let go of logic
Often we maintain expectations of our loved ones beyond their ability to meet them – the idea, for example, that if we explain something logically they will be able to understand why they must do a certain thing, or stop doing something else. The difficult reality is that someone who is suffering from dementia is losing or has lost his or her capacity to apply logic at all times. Instead of explaining, it can help to stick to simple sentences about what is going to happen or what must be done next.

Another trap is the agreement, when we ask someone in the early stages of dementia to agree not to repeat behaviour such as wandering or using the stove unsafely. Just as with a very young child, the individual may agree with you but be unable to control his or her impulses – or even remember the promise. It’s best to restructure the environment to remove as many dangers as possible.

You can also reduce stress if you let go of the idea that it is your responsibility to educate your loved one if he or she is mistaken – for example, if he or she believes his or her mother is alive, it’s not necessarily important to correct the confusion. It may be worth letting some of these things go, even if it is emotionally trying to see such evidence of their own decline.

Modify your language
By making a few changes in how you communicate you may be able to lower confusion and argument. For example, making choices can be difficult for someone suffering from dementia. Rather than phrasing things in the form of a question – “Would you like to go to see your doctor today?” use declarative statements like “Today you’re seeing your doctor.” It may also be simpler to go ahead and prepare meals rather than to ask what the person would like to eat. Keep your sentences short and factual.

When speaking with a person suffering from dementia, it may help to keep distraction to a minimum. Turn off the television. Often a touch on the arm or knee to focus their attention before you speak is useful, as is making eye contact.

One controversial area when caring for loved ones suffering from dementia is the question of the “little white lie.” Our instincts often lead us towards complete honesty. But it may be worth considering whether it is really harmful to allow a loved one to think, for example, that he or she is accompanying you to lunch and to the doctor – and happens to get checked over at the same time – than to have an argument about whether there’s a need for him or her to see the doctor. Clearly this is a very personal decision, but remember that caregiving is a complicated and difficult role – occasionally greasing the wheels of daily life with a bit of fantasy may be well worth it.

Managing frustration
Even the most experienced and caring caregiver will have days – and even weeks and months – where things become overwhelming. It’s very important to seek support and to remember to go easy on yourself. And it’s important to learn the signs of your own frustration and develop strategies to cope.

Signs of frustration that may become overwhelming include shortness of breath, cramps, a knotted feeling, headache, chest pains, cravings for food or drugs, and an overall lack of patience. You can address frustration on several levels. On the physical level, removing yourself from the situation, even for just a few breaths, and breathing deeply can help. A brisk walk can also help, as can doing some yoga (perhaps using a DVD) or taking a bath. Regular exercise can also help.

On the level of the mind, there are some kinds of thinking that contribute to frustration. One of these is to over-generalize (this always happens, this never works out). Discounting the positive is another way of thinking that can add to a sense of stress – for example, overlooking the good things that you do or allowing yourself to be a caring and loving, yet imperfect caregiver. A third negative pattern of thinking is to live in a world of “shoulds” – he should go to sleep now; she should enjoy this dessert – rather than accepting the days as they come.

For each pattern of thinking, try to counter the thoughts in a ‘dialogue’ with yourself. Remind yourself that things are not always difficult, and don’t subject yourself to overly high standards of care. And try to let go of expectations that you find continually disappointing.

Finally, don’t be afraid to reach out for a break. Contact your local health care agency to arrange for respite care or homemaking, or look into day programs. It is just fine – even essential – to take a breather, and will make you a better caregiver in the long run.

Photo © Elisabeth Rawald

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