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Living Day to Day with Alzheimer's disease
An Alzheimer's disease or dementia diagnosis evokes fear for both the patient and their loved ones. Families are often concerned about change and how the disease will impact everyday life. Dementia impacts one's ability to plan, tolerate stress and interpret things in the environment as soon as the first symptoms appear.
These changes strain their ability to function as they have in the past, which makes the role of the caregiver increasingly important. Caregivers are key to helping Alzheimer's or dementia sufferers be their best each day.
What is the best way to promote daily living?
Some important general tips to keep in mind include:
- People with dementia have symptoms that can vary throughout the week or even day. They will have times when they perform well, and others when they will have more problems.
- The person with dementia is always trying as hard as they can. Asking them to "try harder" only causes more problems.
- The role of the caregiver is to "fill in the blanks" by helping the person with things they are unable to do at that moment.
- While it is difficult to hear a person make mistakes and not remember, avoid correcting them. It will only lead to an argument, resulting in a bad day for everyone.
What are the most important aspects to be aware of for everyday living?
Fatigue is the biggest enemy of the person with memory loss. People with brain diseases tire easily because they must concentrate so hard all the time. For many, the late afternoon and early evening hours can be the most challenging due to fatigue, a condition often referred to as "sundowning." Here are effective solutions to prevent fatigue:
- Provide rest periods throughout the day. As a general rule, about 90 minutes of stimulating activity may require about 30 minutes of quiet activity or down time. An afternoon nap or quiet activity such as listening to music or reading the paper will help with late afternoon confusion. If you are planning a social activity or trip, make sure the person with dementia is well-rested both before and after the trip.
- Get to know the person's best time of day. Each person with dementia usually has a best time of day in terms of overall functioning. Use that time to visit friends, go to the doctor, run errands or travel.
- Plan activities that are of a shorter duration. It is important for both the person with dementia and the caregiver to maintain pleasurable activities and to take care of daily chores. Many families make the mistake of trying to accomplish too much during a day. Most people will do best in activities that are kept less than two hours. When too many activities and chores are crammed into the day, there are often behavior consequences later in the day. Use the principles of best time of day along with a 90-minute parameter to guide in planning activities. This may mean that visits are a bit shorter and household chores are spread throughout the week.
- If the person is waking at night, do not keep them up all day. Forcing them to stay up all day can make waking up at night worse! Avoid food and beverages with caffeine. Try decaffeinated coffees, tea, and cola. Chocolate and sugar provided later in the day can also disrupt sleep, as can alcoholic beverages.
Change is also challenging for people with memory loss, as they have problems with planning. Help the person with dementia and decrease their frustration by keeping a routine during the day. Sometimes well-meaning family and friends suggest the person with dementia needs a change of pace. Gently reassure them that this may not be in the person's best interest. As the dementia progresses, redecorating the house, decorating for the holidays, moving or even rearranging the furniture can produce problems. As noted previously, fatigue along with change in routine can create challenges. For example, if the person demands to be taken home during a party or becomes rude to friends or children, understand this behavior is not aimed at the person. Rather, he/she is tired or overwhelmed by the activity level or change in routine, and is trying to communicate these frustrations. Do not try to talk the person into staying until the end of the activity as this may cause behavioral changes for up to two days.
- Be aware that travel can be especially difficult as most travel requires numerous changes. Occasionally you may plan trips or events that you know will trigger increased confusion. Expect and accept the confusion. Plan to have extra help or medications on hand to see you through this period. Try to promote adequate rest periods and make sure you plan the most important activities during the person's best time of day.
Creating too much demand can easily happen as many caregivers feel they need to exercise the brain of the person with dementia. While we want to promote brain activity, we need to make sure that this does not lead to frustration and/or failure. Think about how you feel when someone tells you that you've made a mistake. Being corrected feels pretty bad. The person with dementia is confronted almost daily with their mistakes, which is pretty uncomfortable.
Don't try to exercise the brain by quizzing about facts that require the use of memory. Avoid asking the person: "Do you remember me?" "What is her name?" "Remember what we did yesterday?" Life becomes a constant test for people with memory loss and we don't want them to feel as if they have failed that test again and again. If the person becomes upset, try to distract them rather than confronting them. If that does not work and the person is safe, walk away and let them forget. Use pleasurable, stimulating and successful activities as the best means of promoting brain health.
Loss of relationship with time can also be challenging. Many become anxious, upset and/ or fearful about schedules, especially doctor visits or upcoming visitors. This often leads to frequent questions about "When are we going?" and caregivers getting frustrated by the repeated questioning and inability of the person to remember the response. Therefore, avoid announcing things in advance. Announce activities at the last possible moment. Not only will the person be more comfortable, you as the caregiver will be less frustrated.
Misinterpretation of the environment is also common, because people with memory problems lose the ability to interpret what they see and hear properly. Noises, as well as sights, may become distorted. Many caregivers may think the person is hallucinating (seeing or hearing things that are not present). While hallucinations can occur, it is more likely that the person is misinterpreting their surroundings. Consider these things:
- Television (TV) can cause many problems as the person may not be able to differentiate what is happening on TV versus what is real. For example, watching the news, the military channel, or a murder mystery show may be interpreted as a real event happening to the person! Therefore, be careful of what is playing on TV.
- Seeing a reflection in a window or mirror may be interpreted as someone trying to get into the house. Make sure that drapes/shades are drawn in the evening to prevent this.
- Pictures of families may lead the person to misinterpret the presence of a loved one. Rather than asking or confronting the person about seeing that individual, shift the conversation to talking about their feelings. For example, "Your mom was so loving, what did you enjoy most about her?"
- If the person becomes concerned about safety and the misinterpretation persists, don't try to reason that what they are seeing/hearing is untrue. Rather, reassure them that they are safe, and that you have taken care of the problem. Empathize with how they feel.
Any sudden change in memory, thinking and behavior should be brought to the attention of the physician immediately. This sudden change in mental status is referred to as "delirium" and should be considered a medical emergency. Infections such as pneumonia and urinary tract infections can create this sudden confusion. Chronic conditions such as congestive heart failure and diabetes can also cause delirium if they worsen or get out of control. The delirium should subside in a matter of days when the underlying cause of the problem is treated.
Talk about the disease if the person wants to. Most people with memory and thinking problems know that something is wrong. People with dementia go through a process of grieving similar to that of their family. Research shows that when family refuses to talk with the person about their illness, the person with dementia is likely to become paranoid as family members begin to avoid them.
How do I find activities to keep my loved one occupied? Activities are the single most important aspect of dementia care. Activities define who we are. When the person with dementia loses the ability to drive, work, mow the grass, cook or perform other meaningful tasks, depression or anxiety may result.
The primary role of an activity is to allow the person with dementia to focus on remaining abilities and strengths, thereby enhancing self-esteem. It will be necessary over time to substitute old cherished activities with similar simpler activities.
First of all, consider daily routine chores such as dressing, bathing and eating, as activities. These are part of the daily routine that ground the day and we want to see these maintained for as long as possible. One of the best things to do is to take inventory of lifelong interests and activities.
Begin by selecting up to three favorite activities from the List of Activities. Try one of these activities throughout the week and determine if it brings pleasure. Don't be afraid to modify or simplify an activity as the goal is to promote pleasure and a feeling of success. If that particular activity is not successful, try something different. You may find that the person's interests and abilities change over time, so flexibility is key. Keep in mind the fatigue factor when implementing activities. The person will do best when the activity takes place during their best time of day. View our activity list for ideas.
Below are a variety of quiet, active and social activities to help you with your activity worksheet.
- Afternoon tea
- Arranging fresh flowers
- Bird watching
- Clipping coupons
- Computer work
- Crochet or knit
- Cut out pictures from magazines
- Doing puzzles or games
- Folding clothes
- Listening to or playing music
- Looking at photos
- Meditating or praying
- Playing with or caring for pets
- Polish silver
- Religious activities
- See a sunset
- Sew a quilt square
- Watching special TV programs
- Write a letter to a family member
- Crafts or other hobbies
- Dog walking
- Dust furniture
- Feeding livestock
- Flea Markets
- Holiday preparations
- Picking herbs
- Planting seeds inside or outdoors
- Feed the birds
- Raking leaves
- Running errands
- Shop work
- Sweep outside
- Watering plants
- Yard work
- Art class
- Attending church
- Being around children
- Card groups
- Civic organizations
- Eating out
- Family activities
- Parties & celebrations
- Play horseshoe
- Reminisce about a favorite summer
- Sporting events
- Tell and joke and have a good laugh
- Visiting friends
Schedule Complete a schedule and begin to insert activities your person will enjoy based on whether it is quiet, active, or social.
Physical exercise should be part of the persons daily activity and can take the form of walking, gardening, vacuuming, dancing or other kinds of movement. Twenty minutes of exercise five times a week is recommended. Research suggests that regular aerobic (walking, etc.) exercise may slow the disease progression. Mental exercise can be both fun and helpful when the exercise does not lead to failure or frustration. Common exercises include puzzles (such as find the word puzzles) and working on projects (such as sorting family pictures with you). Playing card games can be stimulating, along with reading/listening to books or short stories.
Caution should be taken to avoid introducing new games as the ability to learn becomes impaired. Creative expression by using the arts can be successful for persons with dementia. Music is the last part of memory to be impacted by diseases affecting memory.
For those who enjoy socialization, this remains a very important activity and may help keep social skills intact for longer periods of time. Time of day and length of socialization should be kept in mind. Social gatherings in small numbers will also be more successful as the person with dementia can better participate in conversations. Remaining active in faith communities and activities often fulfills both social and spiritual needs. The faith rituals of scripture, prayers and other forms of worship remain important aspects throughout dementia for those who have practiced these elements on a regular basis. Finally, many people with dementia enjoy eating out, going to flea markets, shopping and other activities. As long as they enjoy it and do not have behavioral issues the day after, these activities should continue to be pursued.
Be aware of activities that may be too dangerous, such as using power tools, hunting, feeding livestock and working with flammable tools. Try to replace them with safer activities. Likewise, women who have cooked may leave the stove or oven on, or forget how to safely operate sewing machines or the like. Many men who have not had hobbies are able to learn simple repetitive tasks such as painting, latch hook rug making, cooking and simple woodworking with supervision.
You may want to consult an occupational therapist, recreational therapist or activity therapist to help design activities.