Dementia describes any condition where changes in the brain have led to mental deterioration. Many families are faced with the stress of caring for a loved one with dementia.
This tremendous task is physically, emotionally and financially draining. Sometimes the care takes up to 100 hours a week. In 1991, the Canadian Study of Health and Aging reported there were at least 250,000 Canadians with dementia. This represents eight per cent of all Canadians over the age of 65. At current estimates, the number of cases of dementia in Canada is expected to triple in the next 40 years.
Alzheimer Disease is responsible for about 65 per cent of all cases of dementia. Vascular dementia accounts for 20 per cent and other less common causes account for the final 15 per cent. The elderly population suffering from Alzheimer Disease is almost equally divided between those living in the community and those in nursing homes. Most people with severe illness are in institutions.
Of those being cared for in the community with mild to moderate disease, over 70 per cent live with a caregiver such as a husband or wife, son or daughter, or other family member. Caregivers of those with Alzheimer's Disease almost unanimously agree that theirs is a labour of love.
The following suggestions are taken from the New York Hospital, Cornell Medical Centre. They might help those caring for a person with dementia.
Successful communication is essential for the person with dementia to continue to feel connected to the family and surroundings. Effective communication produces clear and simple understanding. You can master useful communication strategies and help the person remain involved in activities.
Stand or sit directly in front of the person when speaking.
Repeat when the person is not able to follow the conversation.
Use simple conversations or words if the person has difficulty understanding.
Ask how the person feels and be prepared to help remove discomfort.
Always listen to what the person is saying.
A person with dementia may become confused about time. Posting a daily schedule in a visible place can be comforting. The schedule needs to be followed every day from morning to evening. If the day is broken into simple events, the activities can be reassuring and meaningful.
If you begin each day with discussion of the schedule, your loved one will have the security of a sense of structure.
Mealtimes can be particularly difficult for both you and your loved one. Keep mealtime activities as simple as possible to reduce confusion.
Provide preseasoned and precut food.
Avoid large platters of food passed around the table.
Tell the person what the foods are.
Remind the person to open the mouth and chew, if needed.
Watch to be sure the food is swallowed and remind if necessary.
Encourage the person to eat at a comfortable pace.
Offer drinks often during the meal.
Use spill proof cups, and plate guards for controlling plate contents.
Many falls occur in the bathroom and special attention needs to be paid to bathroom safety.
Install equipment such as toilet grab bars, elevated toilet seats, padded tub seat or bench, handheld shower spray and shower grabber.
Put a nonskid colourful surface on the bottom of the tub.
Post a sign with a reminder to flush the toilet.
seat lids and a coloured seat alerts them to raise the cover.
bottomless pit with a drain that will pull them away.
Dressing is another area of daily living that can cause stress for caregivers. Matching clothes, managing buttons or zippers and the proper sequence while dressing can be difficult for someone with dementia.
Select clothing that is simple to put on and take off.
Offer one or two choices.
Provide elastic bands for skirts and Velcro fastening for pants.
Fun, laughter, enjoyment and freedom of choice are important to all of us.
Keep magazines, radios and supplies within reach where they are more likely to be used.
Post phone numbers of friends to encourage the person to maintain social contacts.
Sit down with the person to plan specific activities on a daily or even a weekly basis.
large print reading material, talking books and cardholders.
Help the person remain involved in family activities.
Your loved one with dementia can still participate in necessary domestic activities and experience joy and a sense of accomplishment. You can identify these activities and present them with enthusiasm.
Hang, sort and fold laundry.
Assist in cold food preparation.
Cut out coupons for food shopping.
The need for overall safety in the home cannot be stressed too much. There are many modifications you can make.
Use night lights in the bedroom, bathroom and hallway.
Remove locks from bedrooms and bathrooms.
Lock up medications, cleaning fluids, sharp objects and other dangerous items.
Install detachable oven and stove knobs.
Use nonskid wax on polished floors.
Put a safety gate at the top of the stairs.
Avoid cluttered shelves, replace with family photographs.
Recommendations such as these enable family members to be proactive in reducing the caregiver burden and maintaining the quality of life of their loved ones.
Allow the person to make up the activity as it progresses. If the rules are not followed, it's okay, as long as it is fun and not dangerous.
Start simple. You do not want to frustrate the person at the start. You can always increase the difficulty as you go along. Playing cards, for example, could begin with sorting by suits and numbers before actually playing a game. This way you can determine how complicated the activity can be. Consider past leisure interests. If the person never played cards, do not expect any interest in sorting or playing cards now. If tools were an interest, you may suggest sorting nuts and bolts or screws and nails. What type of work did the person do? Try to create an activity that incorporates this.
Music appreciation and ability are the last functions to go. If music was a favorite in the past, find a way to tap into this. Sing along with the person, listen to music or encourage the playing of a musical instrument.
Caring for your loved one who is ill can be rewarding but it is physically and emotionally draining. You must take care of yourself. Remember, you can only continue to give of yourself if you keep your own resources strong.
Eat regular well balanced meals.
Make time for a regular schedule of exercise.
If you are short of sleep, plan to sleep when the person sleeps.
If you are short of sleep several days in a row, ask someone to relieve you so you can have an unbroken 8 hours of sleep.
Relax if the domestic chores are not done to your usual standard.
Call on family or friends to help you when the load seems too heavy.
Talk to a friend, family or a professional if you need a sounding board.
Find a support group where you can talk to others who understand your feelings.
Break big problems down into manageable size by working at them one step at a time.
Set realistic goals for yourself for the amount you are able to do.
Try to set aside special time for the other loved ones in your life.
Respite care gives you a chance to leave the person with someone you can trust. Talk to your family doctor about getting this kind of help when you need it.
Most people with dementia live at home, often placing stress and pressure on family members who care for them. However, some adjustments you make in care can help reduce the burden and maintain the quality of life for both you and your loved one.