Services Available to Families of Alzheimer’s Patients


by Katie Lovette

There are many services available for Alzheimer's patients through the hospital, private agencies, and government agencies. Sometimes it is hard to locate these services without someone pointing you in the right direction. We suggest you make a list of the patient's needs and the kinds of services that you feel will help. Talk with other caregivers in your area and listen to their suggestions. Their experience will give you insight into what is available. Check with each company to clarify what they provide and the cost. Keep records on each company.

All of the decisions should be yours. Do not allow anyone to pressure you. However, also do not expect to find the perfect service. Your insurance will probably cover only one agency, such as a home health agency or outpatient services, unless the doctor provides necessary orders. Perhaps you can engage two or three different agencies so that the patient may receive everything he or she needs. Remember that the service the patient receives can improve the rest of his or her life.


If the patient is in the hospital and is entitled to receive home health care visits after he or she returns home, a social worker will visit with the patient and family in the hospital before they are discharged and sent home. This person will help get the patient signed with a local home health agency or another agency that the hospital provides. Another social worker will be assigned through the home health agency to handle your file. This worker can help with many problems or questions that arise.

A home health agency provides many services and often is able to suggest the right direction for areas not covered by them. The following is a brief explanation of some of those services.


Through home health, nurses are available on 24-hour call. They will come as often as everyday, to once every ninety days, depending on the care the patient requires. They can give shots, measure the patient's vital signs, take cultures, examine catheters, feeding tubes, etc., and monitor the overall well-being of the patient. If the need arises, they can contact the doctor and discuss the problem with him.

Many times the nurses will do a supervisory visit. If you are unhappy with any of the services received, talk to the person sent on the visits. Do not feel obligated to stay with a certain agency. If the agency cannot or will not correct a deficiency, talk to another agency. Talk to friends and others who use home health, to see what agencies they recommend. There are many agencies and there will be one you like. Do not hesitate to look for the service you need.


Home health aides are available from a few days to seven days a week, depending on what your doctor feels is needed. Aides bathe and groom patients, keep their hair clean, toenails and fingernails trimmed, and measure vital signs. The aides are trained to notice changes and may be able to see a problem early, especially if the same aides have attended the patient for an extended period of time.

Physical Therapists

Home health agencies also provide visiting physical therapists if the doctor recommends and writes such orders for the patient. Depending on the need, the patient may receive therapy three to seven days a week, lasting from a few minutes to an hour each visit. The therapist will come to the home and will guide the patient, at the patient's own speed, through the exercises that have been recommended. Some days will be better than others. Be prepared for sore and aching muscles of your disgruntled loved one. The therapy is designed to help rebuild muscles, and increase strength and range of motion after an injury or surgery, such as a broken bone or hip replacement. Not everyone receives physical therapy on a continuous basis; only patients who show progress or response.

This does not mean that caregivers cannot offer a little therapy and exercise on their own to help keep the patient agile and toned. One way is to learn the exercises that the physical therapist performs, and then help the patient perform those exercises on days when the physical therapist does not come to the home. You can also help the patient work his arms and legs to keep them limber. Gently pull the patient's arms up over his head, or as far as the arms will go, and repeat it a few times until one of you becomes tired. This helps to stretch the muscles, keeping them flexible. For the legs, gently bend them, and then straighten them.


Some home health agencies provide sitters for their patients. If the agency does not offer the service itself, it may have a list of people in the area who offer these services.


In most cities, there are many services available but the hard part is finding out about them. Your local department of the National Council on Aging can inform you about the services provided in your area.


One national food service available in many areas is called Meals-on-Wheels. This organization provides a hot, nutritious meal Monday through Friday and on holidays to those who cannot prepare a meal for themselves. Some local chapters deliver meals seven days a week. The meals are delivered by volunteers, who are not frightened away by bad weather.

No matter the person's age or income level, if they are homebound they are eligible to receive this service. These meals cost between $4 and $8 each, depending on where the person lives. If the person cannot afford to pay for the meal, he or she can obtain information about financial assistance through the Meals-on-Wheels program.

Churches and other local, private organizations may also provide meals. Be sure to check with the local senior citizen organization and your church to see what services they can provide. Usually, these are available for a minimal cost.

In some communities, grocery stores offer grocery delivery, which is especially nice if getting out of the house is a chore. Call your local stores and speak with the manager.


An example of a nationally known transportation service is "Dial-A-Ride." Some communities also have their own transportation service for senior and handicapped residents. Some services will transport people to the doctor, pharmacy, grocery or to run errands. These services are for people who have no other means of transportation. Some drivers and their assistants will help load the passenger onto the van and will help them inside their destination or home. Be sure to ask the office personnel exactly what services are provided.


National Council on Aging

The National Council on Aging is an agency with offices all over the country and a national office located in Washington D.C. Check the local telephone directory to see if there is a local office in your area. This office can provide accurate information about many services available to senior citizens in your area, and the costs.

National Council on Aging

409 Third St., S.W.

Washington, DC  20024

(202) 479-1200

(800) 424-9046

On the Web at

American Association Of Retired Persons (AARP)

The AARP is the leading organization for helping people who are over 50 years old. It provides information and education to support their needs and interests on a wide range of topics. Such topics include traveling, home ownership, the Social Security program and benefits, health, and working after retirement. For $8 a year, members are provided with hundreds of dollars in benefits and discounts, as well as a subscription to the AARP newsletter.

American Association of Retired Persons

601 E St., N.W.

Washington, DC  20049

(800) 424-3410

On the Web at

Alzheimer's Association

The Alzheimer's Association is a national organization made up of caregivers and family of Alzheimer's patients. The organization provides information relating to research, caregiving, local chapters, and other valuable support to caregivers. Since 1982, the AA has been raising money to help with research for the prevention and cure of the disease. Such fundraisers include the Memory Walk, which is held by every local chapter to help local families and fund research.

There are many local chapters across the country. Each is dedicated to helping the caregivers cope with the pressures of caring for a loved one stricken with this disease. November has been declared the Alzheimer's Awareness Month.

Alzheimer's Association

919 North Michigan Avenue, Suite 1000

Chicago, Illinois 60611-1676

(800) 272-3900

On the Web at

"Safe Return"

The Alzheimer's Association has started a national program called Safe Return. This program helps to locate, identify and return patients who wander off and become lost. Patients are registered with a national database and receive an I.D. bracelet. If a patient becomes lost, a call to an 800 number begins the process of locating them. Contact your local chapter of the Alzheimer's Association for more details.

The Internet

If you have access to a computer, either at home or at the public library, check the Internet for availability of services. There are web sites that can offer ideas and advice on caregiving also.


The Alzheimer caregiver is often called the second victim of Alzheimer's. The results of caring for a loved one can lead to not only emotional problems such as depression and guilt, but also to physical symptoms such as headaches, sleep disturbances and digestive problems. Many times caregivers ignore their own health because of the care of the patient. This is where support groups can help. These groups are made up of other caregivers who are going through similar problems. Support groups provide the caregiver an avenue through which to discuss individual problems and what is happening at home. Members gain insight on how others are coping, and they receive encouragement and support.

The Family Caregiver Alliance is a national organization dedicated to improving the quality of life for this nation's 25 million caregivers. Even though each caregiver is in a different situation (not all caring for Alzheimer's patients), all caregivers share a common bond. The FCA spent many hours working for recognition of caregivers. The group's work has been successful because in 1994, President Bill Clinton signed a proclamation establishing National Family Caregivers Week, which is recognized each year in November.

Family Caregiver Alliance

425 Bush Street Suite 500

San Francisco, California 94108

(415) 435-3388

(415) 435-3508 (fax)

On the Web at

Caregiver Support Groups offer useful information to caregivers, and assist caregivers in coming together and sharing their feelings in a supportive environment. These support groups help caregivers feel less alone and help to create strong bonds of mutual help and friendship.

Participating in a support group can help caregivers manage stress and improve their skills through the exchange of experiences and details. Sharing problems and coping mechanisms lets caregivers assist others while helping themselves. It also allows them to realize that some of the problems have not solutions, and to accept the situation.

Caregiver Support Groups (check yellow pages for local group)

9621 East Bexhill Drive

Kensington, Maryland 20895-3104

(301) 942-6430


Taking care of an Alzheimer's patient is unbelievably difficult at times and relieving the caregiver from his or her duties whether it's for an hour to a week is vitally important. This kind of temporary relief is known as respite care. A family member, friend, nurse, companion, or a sitter can provide that much-needed break.

The caregiver needs time away from the patient. The job of caregiving can be overwhelming. Constant breaks, as many as possible, from the emotional and physical stress will enable the caregiver to not only provide adequate care for the patient for a longer period of time, but to stay healthy as well.

During this free time, the caregiver can run errands that would be hard to do when their loved one is with them. They can take a nap, engage in a hobby, go to the movies, or visit a friend. Many go shopping, take lessons, swim laps, or take a walk and get some exercise. Whatever relaxes the caregiver can and should be done during this time. This is time for the caregiver to enjoy and think of only themself.

Following are some ideas for respite care. These will help the caregiver decide which one is best for their situation.

Day Care

Outside the home, adult day care programs are designed for patients in the early stages of Alzheimer's and related illnesses. These centers offer activities that stimulate the mind. This type of environment encourages the patient to engage in simple activities that can include exercise, crafts, singing, and interaction with others. The cost of such programs is usually not covered by insurance.

In-Home Care

For in-home respite care, there are three options: skilled nurses and aides from home care agencies; family and friends who offer to help; and paid companions or sitters whom you hire yourself. These various people can provide all areas of care, and provide the primary caregiver with a break.

Each one of these types of caregivers brings their own special skills. I personally prefer family and friends because they add the love and closeness the patient needs at this time. Nurses, aides and paid companions usually have experience, but do not provide the same kind of closeness. We were blessed to have home health nurses and aides who became friends. We felt comfortable calling some of them at night if needed. They answered endless questions and worked their schedules to fit ours when we needed them most.

More than likely, you will have to train anyone who stays with the patient. There will be necessary procedures or certain actions that your loved one will respond to, and these will have to be explained and demonstrated to the sitter. A health care worker is not always trained to give care for the various needs of the patient. For example, most workers we encountered were not trained to handle my grandmother's PEG tube.

Although in some states there is financial assistance available through Medicaid for many services, it usually does not cover the cost for sitters. You will probably have to pay for these services.


Hiring help is difficult. It's hard to find someone you feel comfortable with, and trust with the patient and in your home.

Start by making a list of what type of help is needed and what will be required of the person. When looking for a helper, this will help you be very clear in the job description.

During interviews, be sure to talk about the requirements of the job and what the helper will be expected to do. Do not leave out any detail.

Ask for references and call each one. A few phone calls and/or visits can save a lot of heartaches later.

Before hiring someone, make a written agreement that covers wages, tasks and what is expected and required by each party. You and the helper should both sign the agreement. Then make two copies, one for each of you.

Here are examples of questions to ask at the interview:

            Are you able to lift?

            Are you comfortable giving medicine to the patient?

            Are you comfortable feeding the patient, especially if the patient is fed by a tube (nose or stomach)?

            What will you refuse to do?

            How much do you charge?

            How much advance notice do you need to come for a few hours' stay?

            How long can you stay at any given time?

            Do you have any medical problems yourself?


The sitter's first stays should be short.

Make a list of all telephone numbers of friends and family members, and include the number(s) where you can be reached.

Write instructions on everything that describes the procedures necessary, such as feeding, changing, the preparation of meals, and dispensing any medicine. Make copies of these for future reference and for other sitters.

The helper needs to be able to do everything on the list.

Realize the patient has to become accustomed to the new helper, and vice versa.

If you have to criticize, do so in a brief and concise way. Offer suggestions on improvement in a calm and polite manner.

Praise a job well done.


Adult Homes

These types of homes are known as group homes or foster homes and offer limited services that do not include skilled nursing care. The home does not have to be licensed and you must oversee their work. Find out if they provide a lot of individual care or if the patient is left on their own. Most adult homes do not provide individual care. All activities are performed in a group setting. This can be a viable option for patients in the early stages of Alzheimer's.

Nursing Homes

Do not be frightened by all the bad publicity these places have received. Many nursing homes provide wonderful care and boast skilled nursing care. Be sure to find out the exact services a home offers and determine if a particular home provides the care that the patient needs.

Before placing a patient in a home, visit it several times at different times of the day and week. It's especially important to make one of those visits during meal time, when the staff is busiest, to see how well the home operates under pressure.

After the patient is placed in the home, visit him at different times for the same reason. If there is a problem, arriving unexpectedly will allow you to see exactly what is happening.

Nursing homes provide around-the-clock nursing services. The facilities are equipped to provide more extensive care, such as administering injections, monitoring blood pressure, and caring for patients on ventilators. However, many residents of skilled nursing facilities may be receiving only "custodial" care such as help with bathing, dressing, eating, using the toilet, and getting in and out of bed. In addition, nursing homes are required to provide recreational activities for residents. They may also provide rehabilitative services, such as physical, occupational or speech therapy. Nursing homes can be very expensive, averaging $40,000 per year depending on where you live.

Currently, Medicare does not cover the cost of routine care in a nursing home, but Medicaid does. Medicare will help you pay for up to 100 days of medically necessary care for older persons and other qualified individuals.

Special care units for individuals with Alzheimer's disease may be designated in portions of existing nursing homes. Special services may include secured grounds, trained staff, and equipped rooms. As of 1998, federal guidelines had not yet been established so the caregiver should exercise caution in choosing a facility that provides special benefits for its dementia residents. These special units are expensive and are not covered by Medicare.


Hospice is end-of-life care that can either be offered at home or in a facility or institution. Not every patient will qualify for hospice, but when they do, the service is invaluable.

Founded in 1978, the National Hospice Organization is the oldest and larges nonprofit organization devoted exclusively to hospice care and to making it a permanent part of the U.S. health care system. NHO is dedicated to promoting and maintaining quality care for terminally ill people and their families.

Hospice care is a compassionate, dedicated method of caring for the terminally ill, so that a person may live the last days of his or her life with dignity and comfort at home or in a home-like setting. Hospice care does not cure, but helps the patient and the family by alleviating or controlling the pain and symptoms so the patient's final days are lived as comfortably as possible.

Medicare will pay for hospice with orders from the doctor. If after six months the patient begins to recover, then they are referred back for home health care. If the patient becomes worse, hospice can be resumed.

From Loving Care for Alzheimer’s Patients, by Katie Lovette. Copyright © 1999 by Health Information Press. Excerpted by arrangement with Health Information Press. $14.95. Available in local bookstores or call 800-MEDSHOP or click here.