Alzheimer's Caregivers Guide: Tips for caring for a person with dementia

Setting up home care

Soon after a diagnosis of Alzheimer’s, it will be necessary to get started on making changes that help provide a sense of well being and physical safety for the affected person. Things that were taken for granted before, such as home safety and socializing, will now require some planning. There will be a need to communicate in new ways and make changes to the home environment. These changes include:

Adjusting your communication style to the patient’s changing needs as the disease progresses. This is discussed throughout Part II of this series from talking to the early-stage Alzheimer’s patient who is in denial, to handling aggressive or paranoid behavior in the middle stage, then relating to the dying patient.
Scheduling visitors to avoid surprises and have something to look forward to. Even if the elder with dementia does not recognize those who visit, the contact is nonetheless valuable for them.
Establishing routines in activities of daily living
Maintaining social contacts and fun
Setting up a safe home environment
Considering placement in a facility if caregiving becomes unmanageable at home

Promoting comfort and safety

As the symptoms of Alzheimer’s progress, the person becomes more emotionally fragile. At first, there may be the sense of grief and dread that accompanies the awareness of having a progressive terminal illness. During this early stage of the disease, caregivers can promote the patient’s sense of well being by providing emotional support and by helping to maintain familiar activities and social contacts. Eventually though, the diagnosis of Alzheimer’s is forgotten and the ability to be rational fades. Logical thinking can no longer be used to help alleviate fear and confusion. As problems with memory and judgment increase, the patient becomes more vulnerable to accidents and injuries. Problem behaviors develop that place the person at increased risk of getting lost or getting hurt. Caregivers must hone communication skills and make changes to the home environment in anticipation of the problems of mid-stage Alzheimer’s disease. Following are some tips for promoting physical safety and emotional comfort.

Be sensitive and gentle about informing the patient of the diagnosis.

There will be times when you’ll want to remind the person that they have Alzheimer’s. At other times it might be better to refer to a “memory problem.” Even if you repeatedly tell the elder that they have Alzheimer's disease, they may not remember that you told them. Be prepared to patiently repeat the information at times when you’re trying to help the person understand why they can’t do something or why you are taking over a task the person used to do.

Develop a positive attitude.

Many people look on their caregiving responsibility as a way of being involved with their loved one. Their caring is based on unconditional love, and they do not consider it a burden. Dementia patients are able to read body language and to respond to the positive attitudes of the caregiver. Where patient and caregiver have had problems in their past relationship, it can be especially challenging to empathize and be kind, so a support system for the caregiver is most important.

Learn to communicate with an Alzheimer’s patient

Acknowledge requests and respond to them. Don’t argue or try to change the person’s mind, even if you believe the request is irrational. Be affectionate with the patient, if this feels natural.
Try not to set up a cycle of paying attention only when the person displays problem behaviors. Break this negative cycle by being supportive of positive behavior.

Remember the worth of the person as a human being.

Even if they don’t seem to respond, the person deserves to be loved and cared for, touched, and spoken to. Much like an infant, the dementia patient thrives on human contact. If treated poorly, the person feels rejection, loneliness, grief, and pain. Your warm, supportive care is essential to the dementia patient’s well being.

Managing behavior problems

Be accepting of the increasingly limited capabilities of the person with dementia and implement care strategies accordingly. Do your best to be patient, kind, flexible, supportive, and calm. This disease is no one’s fault, although it is very aggravating and disappointing.

By the same token, don’t take problem behaviors (like aggressiveness or wandering) personally. Accept the symptoms of the disease and proceed from there. Remember that the person is not behaving this way on purpose. For some of these problems, medications may be helpful

See Alzheimer’s Care: Managing Behavior Problems.

Expect the patient to totally lose their memory.

Be ready with boundless patience. Many Alzheimer's sufferers have no awareness of their loss of memory. You may feel aggravated at repetitive behaviors or with having to repeat what you just said, time and time again. The positive side of this is that the person is not as upset as you are; they don’t realize what is happening to them or how it affects you.

Get emotional support for yourself.

The above suggestions can be hard to implement. You have your own sense of grief and loss about the diagnosis--feelings that may be compounded as you see the person you’ve known and loved gradually lose their familiar personality and abilities. Your lifestyle may be radically changed, especially if you are the lone caregiver. Besides, some caregivers may have responsibility for a person who they weren’t very close to, or who treated them badly in the past, making it particularly hard to stay positive or to empathize with the patient. Remember there is plenty of support for you in this journey if only you reach out for it.

See Support for Caregivers of People with Alzheimer’s Disease or another Dementia for information about caring for yourself during this difficult time.

Engaging the Alzheimer’s patient in activities

Keeping the mind and body active is an important part of Alzheimer’s care. During early-stage Alzheimer’s, slowing the progression of the disease can involve maintaining a variety of activities in terms of mental and physical exercise, diet and social life. New experiences are likely to stimulate the health of the brain. The trick is to provide a variety of stimuli that reduces boredom, while maintaining a relaxing enough environment to avoid over-stimulating or stressing the patient.

Fun and active ideas for engaging an Alzheimer’s patient
Gear activities to the patient’s ability to participate	Plan activities that the patient is interested in, such as art, cooking, walking, swimming, or gardening. Focus on enjoyment, not achievement. If the person is lucid enough, involve them in making music, doing puzzles or crosswords, or playing memory games, card or board games. Or, the patient may passively enjoy hearing music, contact with pets, or sitting outside in the garden.
Use humor	Even when Alzheimer's patients no longer have the cognitive ability to understand your humor, they can still appreciate it. They may still smile or laugh and sharing that laughter can be a relief to both you and your charge. Use the same modes of humor as you always have: teasing, nonsense, clowning. Be even more silly than usual!
Get outdoors	Go for walks in the neighborhood, go for a drive, or spend time at a park. Walking is often therapeutic, although the pace may not be as vigorous as you might like. Develop a style of paying more attention to the beauty and novelty of your surroundings as you walk.
Maintain an active social life	To counteract isolation and loneliness, encourage family and friends to stay involved. Take the patient to family gatherings if it’s comfortable to do so. Schedule visitors, to avoid surprises and have something to look forward to. Even if the elder with dementia does not recognize those who visit, the contact is nonetheless valuable for them.
Seek out organized group activities.	Senior centers and adult day care facilities usually provide opportunities for structured activities such as exercise, sharing meals, group games and socializing. Some programs are set up specifically to meet the needs of dementia patients. This will provide social stimulation for the patient and respite for you, the caregiver.
Join in	Sometimes the caregiver will want to join the patient in family gatherings or stay in the home when visitors are present. Caregivers can start feeling isolated and lonely themselves as more and more of their time is built around the elder’s needs. If the patient feels safe with the visitors, the caregiver can use the visiting time as an opportunity for relief and respite. Adult day care has similar benefits: social stimulation for the patient and free time for the caregiver.

Routines in Alzheimer’s care

As symptoms progress, unfamiliar people, places and activities can be upsetting or confusing. Routines are reassuring to Alzheimer's patients. Here are some recommendations as mid-stage Alzheimer’s begins:

Structure the day.
Provide consistent environmental cues about time of day.
Help the person to look forward to milestones of the day, such as bathing, dressing, meal preparation and eating, going outdoors, having visitors, getting ready for bed. Talk about the upcoming markers of the day.
Enlist the patient in accomplishing small tasks around the house or yard.
Keep the environment familiar. Put things in expected places. Novelty and surprise are not helpful to most Alzheimer's patients.
Be near the person. Many dementia patients feel most comfortable if their caregiver is nearby. You do not have to talk or entertain them.
Create a routine around regular toilet visits, to avoid embarrassment, discomfort, or medical complications. The caregiver may have to help with hygiene. In late-stage Alzheimer’s, adult diapers are often needed.

Keeping the Alzheimer's patient safe

At some point, you will need to determine that it is no longer safe to leave the Alzheimer's patient alone in the house for more than a few minutes. Some warning signs that this time has arrived are when the patient:

forgets to turn off the stove when done cooking, or the faucet when they are done using the water
forgets to close the front door
forgets to turn off is no longer able to use the telephone to call for assistance from neighbors or emergency personnel (e.g., to call 911)
does not notice dangerous situations such as fire, or spilled water on the floor
is unpredictable or confused under stressful conditions
is no longer happy when left alone at home: is agitated, depressed, or withdrawn
wanders or becomes disoriented
does not realize that some activities he/she engages in are ones that now require supervision, such as cooking, ironing, or bathing.
Keep evaluating whether the person can be left alone, until you finally determine that it is time to supervise or be with the Alzheimer's patient at all times. This may be when you first seek outside helpers to be with the patient while you sleep, go grocery shopping, or have some respite.

Keeping the Alzheimer's patient safe in the house

Make the home environment as safe as possible with a combination of the following:

Safety Precautions for Alzheimer’s Care

If necessary, have a friend, family member or hired caregiver in the house with the patient when you go out.

Perform an Internet search for Alzheimer's products and online stores.

Purchase safety latches or locks for cabinets that contain medications and cleaning products. Large drug stores, large children’s stores, and large toy stores sell child safety equipment that may be suitable.

Child safety gates may be used to block stairwells and rooms you don’t want the person to enter.

Get plastic covers for the corners of furniture to protect against injury.

Indoors, place furniture against the walls and keep the walking areas clear of electrical cords and other hindrances to movement.

Placing the dementia patient in a facility

The late stages of Alzheimer's require twenty-four hour care. This may be the point when you consider institutionalization. To determine when you should send the patient with Alzheimer's disease or another dementia to a facility, consider two factors: your own physical and mental state, and the patient’s physical and mental state.

Your physical and mental state

For many caregivers, the time to send the elder in a facility is when they themselves can no longer cope with the physical or mental demands of caregiving. If you are having coping difficulties, try various support services. Telltale signs of the need for caregiver support are:

Feeling very stressed, anxious, depressed, easily angered, or irritable
Feeling exhausted or having sleep problems
Your health begins to deteriorate
People say you are depressed or exhausted, but you deny it.
When you withdraw socially
When you can’t concentrate anymore

You can try resolving these problems through a doctor or counselor or support group. Studies have shown that the more support and counseling that caregivers get, the longer the patient stays out of an institution.

The elder’s mental and physical state

Some key behaviors or conditions in the patient that would cause you to consider a facility are

The person is so physically abusive that you don’t feel safe anymore.
The person wanders from home and jeopardizes his/her own safety.

You might at first consider adult day care or respite care to give yourself a break. Such a break may give you what you need to continue with caregiving for a while, or you may use the break to think more clearly about care in a facility for your loved one. Note that placing your relative who has dementia into a facility may bring on added emotional stress. When caregivers place their loved one in a facility they sometimes merely trade the stress of caring for a dementia patient for the stress of managing and witnessing care in a facility. On the other hand, a facility sometimes is better for the patient--a good alternative to the isolation of home care with the social stimulation and professional care provided.

Best types of facilities for Alzheimer's patients

Some facilities claim to specialize in treating the elder with Alzheimer's disease or other dementia, but not all of them excel in this kind of care. Those that do excel tend to be very expensive. If you cannot afford such care, look for a facility where you and others can visit frequently and assist with your loved one’s needs. Ideally you’ll find a facility where the following criteria are met:

Criteria for a Good Alzheimer’s Care Facility
Caregivers help patients get ample movement	If the patient can move on their own, caregivers help the person to get out of bed. Otherwise, caregiversmove the person within their bed and around the facility, particularly outside.
Caregivers appear to truly enjoy what they are doing	Many cultures have a tradition of gracefully and generously caring for elders. Look for facilities where many of the caregivers are from cultures that treat elders with love and respect. Also consider facilities supported by religious organizations because the high proportion of volunteers may ensure more willing caregiving.
Care is culturally and linguistically specific.	It is best to have caregivers who interact with the patient in the patient’s own language. Many patients revert to their native language in the later stages of Alzheimer's, and caregivers must adjust accordingly. Check for cultural sensitivity in how personnel care for patients.
Patients with dementia live together	Dementia patients should be cared for together with other patients in a group setting. Studies have shown that the social aspects of a group are beneficial to patients with Alzheimer's or other dementias.

Try to remember that you are never entirely alone as a caregiver. The online references below include hotlines for support and advice, and organizations that can provide referrals to appropriate facilities that are affordable for you and near where you live. Hopefully you’ve been involved with both a support group and a care manager to help you with the difficult decisions in the later states of Alzheimer’s care.

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Alzheimer's Caregivers Guide

TIPS FOR CARING FOR A PERSON WITH ALZHEIMER'S DISEASE

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