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Serving Philadelphia, Delaware County, Montgomery County, Bucks County and Chester County since 1996.
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Issue 5, August, 2007
FEATURE ARTICLE - Family Care Agreements, A Golden Opportunity
HEALTHLINE - Preventing Falls In The Elderly
LEGALLINE - Veterans Benefits - What You Might Not Know (Part 2)
CAREGIVER HELPLINE - Caring For Someone With Dementia (Part 3)
Caring For Someone With Dementia (Part 3)
August LifeLines concludes our ongoing coverage of Caring for Someone With Dementia. We have identified many struggles that arise for caregivers of
someone with Alzheimer's Disease (AD). Our goal in this series has been to share some insight from professionals in the field of
caring for those who suffer from this disease. Our final installment will cover topics including driving, activities, exercise, incontinence, sleep problems, hallucinations and delusions, wandering and home safety.
We will also cover one of the most important steps of the process, that of choosing a nursing home when a caregiver can no longer take care of a loved one at
home. Finally, we will offer many valuable resources from organizations who offer information for caregivers about AD.
ACTIVITIES
What to do all day? Finding activities that the person with AD can do and is interested in can be a challenge. Building on current skills generally works better than
trying to teach something new.
Don't expect too much. Simple activities are often best, especially when they use current abilities.
Help the person get started on an activity. Break the activity down into small steps and praise the person for each step he or she completes.
Watch for signs of agitation or frustration with an activity. Gently help or distract the person for each step he or she completes.
Incorporate activities the person seems to enjoy into your daily routine and try to do them at a similar time each day.
Try to include the person with AD in the entire activity process. For instance, at mealtimes, encourage the person to help prepare the food,
set the table, pull out the chairs or put away the dishes. This can help maintain functional skills, enhance feelings of personal control and make good use of time.
Take advantage of adult day services, which provide various activities for the person with AD, as well as an opportunity for caregivers to gain temporary relief from
tasks associated with caregiving. Transportation and meals often are provided.
EXERCISE
Incorporating exercise into the daily routine has benefits for both the person with AD and the caregiver. Not only can it improve health, but it can
also provide a meaningful activity for both of you to share.
Think about what kind of physical activities you both enjoy, perhaps walking, swimming, tennis, dancing or gardening. Determine
the time of day and place where this type of activity would work best.
Be realistic in your expectations. Build slowly, perhaps just starting with a short walk around the yard, for example, before progressing to a walk around the block.
Be aware of any discomfort or signs of overexertion. Talk to the person's doctor if this happens.
Allow as much independence as possible, even if it means a less-than-perfect garden or a scoreless tennis match.
See what kinds of exercise programs are available in your area. Senior centers may have group programs for people who enjoy exercising with others.
Local malls often have walking clubs and provide a place to exercise when the weather is bad.
Encourage physical activities. Spend time outside when the weather permits. Exercise often helps everyone sleep better.
INCONTINENCE
As the disease progresses, many people with AD begin to experience incontinence, or the inability to control their bladder and/or bowels.
Incontinence can be upsetting to the person and difficult for the caregiver. Sometimes incontinence is due to physical illness, so be sure
to discuss it with the person's doctor.
Have a routine for taking the person to the bathroom and stick to it as closely as possible. For example, take the person to the
bathroom every 3 hours or so during the day. Don't wait for the person to ask.
Watch for sign that the person may have to go to the bathroom, such as restlessness or pulling at clothes. respond quickly.
Be understanding when accidents occur. Stay calm and reassure the person if he or she is upset. Try to keep track of when
accidents occur to help plan ways to avoid them.
To help prevent night-time accidents, limit certain types of fluids - such as those with caffeine - in the evening.
If you are going to be out with the person, plan ahead. Know where restrooms are located, and have the person wear
simple, easy-to-remove clothing. Take an extra set of clothing along in case of an accident.
SLEEP PROBLEMS
For the exhausted caregiver, sleep can't come too soon. For many people with AD however, the approach of nighttime may be a difficult time. many people with AD
become restless, agitated and irritable around dinnertime, often referred to as "sundowning" sydrome. Getting the person to go to bed and stay there
may require some advance planning.
Encourage exercise during the day and limit daytime napping, but make sure that the person gets adequate rest during the day
because fatigue can increase the likelihood of late afternoon restlessness.
Try to schedule more physically demanding activities earlier in the day. For example, bathing could be earlier in the morning,
or large family meals could be at midday.
Set a quiet, peaceful tone in the evening to encourage sleep. Keep the lights dim, eliminate loud noises, even play soothing music
if the person seems to enjoy it.
Try to keep bedtime at a similar time each evening. Developing a bedtime routine may help.
Restrict access to caffeine late in the day.
Use night lights in the bedroom, hall and bathroom if the darkness is frightening or disorienting.
HALLUCINATIONS AND DELUSIONS
As the disease progresses, a person with AD may experience hallucinations and/or delusions. Hallucinations are when the person sees, hears, smells, tastes
or feels something that is not there. Delusions are false beliefs from which the person cannot be dissuaded.
Sometimes hallucinations and delusions are a sign of physical illness. Keep track of what the person is experiencing and discuss it with the doctor.
Avoid arguing with the person about what he or she sees or hears. Try to respond to the feelings he or she is expressing, and provide reassurance and comfort.
Try to distract the person to another topic or activity. Sometimes moving to another room or going outside for a walk may help.
Turn off the television set when violent or disturbing programs are on. The person with AD may not be able to distinguish television programming from reality.
Make sure the person is safe and does not have access to anything he or she could use to harm anyone.
WANDERING
Keeping the person safe is one of the most important aspects of caregiving. Some people with AD have a tendency to wander away from their home or their caregiver. Knowing what to do to limit wandering can protect a person from becoming lost.
Make sure the person carries some kind of identification or wears a medical bracelet. Consider enrolling the person in the Alzheimer's
Safe Return program if the program is available in your area. If the person gets lost and is unable to communicate adequately, identification will alert others to the person's
medical condition. Notify neighbors and local authorities in advance that the person has a tendancy to wander.
Keep a recent photograph or videotape of the person with AD to assist police if the person becomes lost.
Keep doors locked. Consider a keyed deadbolt or an additional lock up high or down low on the door. If the person can open a lock because it is familiar, a new latch or lock may help.
Be sure to secure or put away anything that could cause danger, both inside and outside the house.
HOME SAFETY
Caregivers of people with AD often have to look at their homes through new eyes to identify and correct safety risks. Creating a safe environment can prevent many
stressful and dangerous situations. The ADEAR Center offers the booklet, Home Safety for People with Alzheimer's Disease, which lists many helpful tips.
Install secure locks on all outside windows and doors, especially if the person is prone to wandering. Remove the locks on bathroom doors to prevent
the person from accidentally locking himself or herself in.
Use childproof latches on kitchen cabinets and anyplace where cleaning supplies or other chemicals are kept.
Label medications and keep them locked up. Also make sure knives, lighters, matches and guns are secured and out of reach.
Keep the house free from clutter. remove scatter rugs and anything else that might contribute to a fall. Make sure lighting
is good both inside and out.
Be alert to and address kitchen-safety issues, such as the person forgetting to turn off the stove after cooking. Consider installing
an automatic shut-off switch on the stove to prevent burns or fires.
DRIVING
Making the decision that a person with AD is no longer safe to drive is difficult, and it needs to be communicated carefully and sensitively.
Even though the person may be upset by the loss of independence, safety must be the priority.
Look for clues that safe driving is no longer possible, including getting lost in familiar places, driving too fast or too slow, disregarding
traffic signs or getting angry or confused.
Be sensitive to the person's feelings about losing the ability to drive, but be firm in your request that he or she no longer do so.
Be consistent - don't allow the person to drive on "good days" but forbid it on "bad days."
Ask the doctor to help. The person may view the doctor as an authority and be willing to stop driving. The doctor can also contact the
Department of Motor Vehicles and request that the person be reevaluated.
If necessary, take the car keys. If just having keys is important to the person, substitute a different set of keys.
If all else fails, disable the car or move it to a location where the person cannot see it or gain access to it.
CHOOSING A NURSING HOME
For many caregivers, there comes a point when they are no longer able to take care of their loved one at home. Choosing a residential care
facility - a nursing home or an assisted living facility - is a big decision, and it can be hard to know where to start. If you are a Levandowski &
Darpino Life Care Planning client, we will help you with this. If you are doing it on your own, here are some considerations:
It's helpful to gather information about services and options before the need actually arises. This gives you time to explore fully
all the possibilities before making a decision.
Determine what facilities are in your area. Doctors, friends and relatives, your elder care attorney, hospital social workers and religious
organizations may be able to help you identify specific facilities.
Make a list of questions you would like to ask the staff. Think about what is important to you, such as activity programs, transportation or
special units for people with AD.
Contact the places that interest you and make an appointment to visit. Talk to the administration, nursing staff and residents.
Observe the way the facility runs and how residents are treated. You may want to drop by again unannounced to see if your impressions are the same.
Find out what kinds of programs and services are offered for people with AD and their families. Ask about staff training in dementia care, and check to see
what the policy is about family participation in planning patient care.
Check on room availability, cost and method of payment, and participating in Medicare or Medicaid. You may want to place your name on a waiting list
even if you are not ready to make an immediate decision about long-term care.
Once you have made a decision, be sure you understand the terms of the contract and financial agreement. Consider having an elder law attorney
review the documents with you before signing.
Moving is a big change for both the person with AD and the caregiver. A social worker may be able to help you plan for and adjust to the move.
It is important to have support during this difficult transition.
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