A good place to start is with the person's physician. A neurologist, geriatrician, or an internist can also be a valuable resource.

States may have specialized centers for the evaluation and treatment of people with Alzheimer's disease. These centers may provide geriatric evaluations and assessment procedures plus other services. States may also have specialized services for people with developmental disabilities who are aging. These may include special clinics of local mental retardation, mental health or aging agencies, and university affiliated programs in developmental disabilities.

To find Alzheimer's disease services in your area, contact the city or county health department, local mental health/mental retardation centers, hospitals, area agency on aging or the information and referral service that many cities provide through the United Way or other organizations. You may also be able to locate these services by looking in the telephone book under "Health" or "Social" Services. These same resources may also be able to refer you to any state or community programs or clinics which specialize in services to older people with developmental disabilities.

What are the steps beyond diagnosis? Once the suspicion of Alzheimer's disease has been clinically confirmed, the person's family, caregiver, or paid providers may need to make changes in the person's daily routine. First and foremost, the person must feel safe and secure in his or her environment. As a result of the complications associated with Alzheimer's disease, what may have been comfortable and familiar for the individual will become unrecognizable and result in unpredictable behavior. For example, some persons may have changes in behavior that make them seem suspicious and delusional.

To help with the changes in behavior, consider the following:

Emphasize maintaining abilities, particularly those affecting dignity (e.g., toileting, eating), rather than trying to teach new skills.

Keep changes in environment and daily routine to an absolute minimum.

Simplify routines and reduce choices to minimize feelings of anxiety and frustration.

Use patience and redirection, keep verbal requests simple, and provide general supportive care.

Maintain self-awareness by using reminiscing and talking about past experiences, when appropriate.

Help the person maintain his or her orientation by naming events for the day, reminding him or her of the day, time and place, and repeating the names of others around him or her.

Try not to "force" him or her back to your reality, but also don't allow a move into a delusion that you may be inadvertently reinforcing.

Reassure the person daily, even when there is no response.

Try to understand the words and symbols the person is using in communicating.

Be patient, and don't try to force the person to understand your means of communicating; adapt to his or hers.

Provide appropriate foods and liquids to maintain nutrition and hydration.

Respond to suspicions and delusions with reassurance.

Consult a physician about stopping nonessential medications and, when appropriate, assume responsibility for giving the person his or her needed medications.

Minimize toileting accidents by establishing a toileting routine.

Convey affection and protection by a quiet voice and use touch for reassurance and praise.

To help with changes in program practices, consider the following:

Provide a familiar and safe environment, and provide closer supervision to minimize confusion and disorientation.

Maintain present level of independence by increasing staff supervision, prompts, and hands-on care.

Modify the individual's program or support plan to anticipate changing activities of daily living (ADLs) and supervision needs.

Monitor and document increased episodes of confusion, disorientation, or memory lapses to become more prepared as they repeat in the future.

Continue assessments for mobility, safety, and ADL needs. Inform staff, family members, and caregivers close to the person of changes and strategies in the plan of care.

Seek to identify "triggers" that result in inappro-priate or dangerous behavior and try to minimize the likelihood that they will occur in the future.

What are some other concerns?

Other concerns may include how to help staff adapt programs and services to changes that result from Alzheimer's disease, especially how to serve that person with dignity, how to help adults with possible Alzheimer's disease "age in place," and how to prevent or defer changes in residence.

In some programs, particularly those governed by state regulations requiring active treatment, staff may need to emphasize a different approach to care.

The program plan should be adapted to reflect the behavioral and physical changes the persons may experience that result from the various stages of the disease.

Program philosophies that emphasize choice-making may need to be reevaluated, because making choices can be very confusing and frustrating for someone with Alzheimer's disease.

As the disease progresses, staff need to be prepared to adapt treatment practices to the changing needs of the individual with probable Alzheimer's disease.

These adaptations should reflect a knowledge of the course of Alzheimer's disease and the potential for diminishing abilities among self-care, communication, and orientation skills.

A balance should be maintained between compensating for loss of skills and maintaining development.

Early signs and symptoms of Alzheimer's disease do not necessarily warrant changes of a program or residence, particularly if the older adult is already used to attending or living in a familiar place.

The adult should be allowed to "age in place" with dignity and respect.

Many adaptations can be made to the person's program or home environment to make it safe and practical.

Modifications in activities and supervision may be necessary.

Many caregivers will continue to provide care no matter how difficult it is. However, with the advanced progression of the disease, particularly when there is total loss of self-care skills and mental abilities, some caregivers or staff may be faced with the difficult decision of whether or not to accept admission to a facility that can provide appropriate long-term care.

The need to change residence can be reduced by providing supports greater than those already being provided to the individual. Providing such supports should always be considered prior to a change in the person's residence.

Those at jeopardy of having to change residence as the disease progresses include persons who are living:

With a caregiver who may be unable to continue supervision and supports on his or her own, unless he or she receives additional assistance.

Alone or with a spouse or friend and who may be at risk for personal injury due to memory loss, disorientation, and personal skill deterioration.

In a residence where the person's needs have substantially changed due to an increased need for supervision and nursing care, the individual's behavior has a marked negative effect upon others in the residence, or the individual's overall deteriorating condition transcends the level of care which can be provided in the residence.

Where can families and caregivers of a person with a developmental disability and Alzheimer's disease get help?

As a family member, you may need to plan for future care in a residential setting that is equipped to provide for a person with a developmental disability who has Alzheimer's disease. However, until that time, many things can be done to provide in-home supports.

Many family members and caregivers of an adult with a developmental disability have provided a lifetime of affection, support, and care while watching the individual progress and become more independent. It is particularly difficult for a family member or caregiver to watch his or her relative lose skills associated with the onset of Alzheimer's disease. Therefore, it is very important to obtain services and supports during this difficult time.

Certain specific services may be helpful in supporting the care that you are providing:

Home care services - These include having a homemaker assist in the home or having a nursing aide provide personal care to the adult. It may also include home-delivered meals, friendly visiting, and the services of a senior companion. For the names of agencies that provide home care services in your community, call your local area agency on aging or look in the yellow pages of your telephone directory (generally under "Home Health Services").

Adult day care - Available in many communities, this program may offer a brief respite from caregiving and an opportunity for the adult to become involved in different day activities. For names and locations of adult day care programs in your community, call your local area agency on aging, your county health department, the local chapter of The Arc or other disability agency, or look in the yellow pages of your telephone directory (generally under "Day Care Centers-Adult" or "Elderly Person Services").

Overnight or weekend respite - Either in the home or at another setting, respite offers a chance for the caregiver to take a vacation or other short break from caregiving. For names of agencies that provide respite services in your community, call your area agency on aging, the local or state mental retardation agency, local chapter of The Arc or other disability agency, or look in the yellow pages of your telephone directory (generally under "Social and Human Services").

Hospice - This includes special support services in the home or within a specialized hospice setting during the last six months of life. Hospice services are for persons who are terminally ill as well as for their caregivers. For the name of the hospice in your community, contact your local health department or look in the yellow pages of your telephone directory (generally under "Hospices").

Financial or legal aid - This includes aid in arranging for payment for care and help in settling legal concerns, such as wills and trusts. For information on how to obtain such aid, consult your local area agency on aging, local chapter of The Arc, or other local disability agency.

Local support groups - These include counseling or other group supports with persons in a similar situation. Some area agencies on aging or local senior services agencies maintain special caregiver assistance programs. Some of these include special supports for parents with a son or daughter with a developmental disability. These programs can help you obtain specialized in-home services and other supports. To receive more information regarding any of these services, call your local area agency on aging or local chapter of The Arc.

If you are a staff member providing residential or day services for an individual with a developmental disability whom you suspect may be showing symptoms of Alzheimer's disease, you can turn to your agency for guidance and assistance. You can also call your local area agency on aging, local office of your state mental retardation and developmental disabilities agency, local chapter of The Arc,or any local Alzheimer's disease or dementia assistance program or service for advice.

If you are providing care to an individual with Alzheimer's disease, you may want to participate in a support or educational group. These groups are for people in similar caregiving situations who meet regularly to share experiences and advice with each other and learn about resources available to them. To find out about support and educational groups and related resources in your area, call your local area agency on aging, mental retardation state agency, local chapter of The Arc or other disability agency, or look in the yellow pages of your telephone directory (generally under "Social and Human Services") or in the white pages business listings.

Where can you obtain assistance?

Caring for someone with a developmental disability who may have Alzheimer's disease can be a long and difficult task. There are many helpful resources that can assist families and other caregivers of people with Alzheimer's disease.

Some terms . . .

activities of daily living (ADL) - routine activities engaged in during the course of the day, such as washing, grooming, dressing, eating and cooking. associated disorders - conditions that are present at the same time.

Alzheimer's disease - a progressive neurodegenerative disease characterized by loss of function and death of nerve cells in several areas of the brain, leading to loss of cognitive function such as memory and language.

autopsy for Alzheimer's disease - gross and microscopic examinations of brain tissue after death to confirm the clinical diagnosis.

cataracts - a clouding of the lens of the eye which blurs vision.

cognitive changes - changes in thinking abilities (such as reasoning).

cortical dementia - dementia associated with impairment of that part of the brain that affects memory, attention, reasoning, and abstract thinking.

Creutzfeldt-Jakob disease - a neurological disease, lasting about three years, that leads to rapid loss of memory, speech and writing skills, reasoning abilities, and a majority of bodily functions prior to death.

definite Alzheimer's disease - a level of diagnosis that is supported by evidence of neurological changes present at autopsy.

delusions - beliefs maintained even when they are contrary to truth.

dementia - widespread loss of mental skills and abilities of such severity that capability to care for oneself is lost.

developmental disability - any mental or physical functional impairment that occurs before age 22, impedes normal growth and development, and which continues into old age.

differential diagnosis - clinical evaluation of possible causes of dementia to rule out all other factors before settling on Alzheimer's disease.

Down syndrome - a chromosomal abnormality of chromosome 21 associated with mental retardation.

functional capabilities - what a person is able to do.

head injury - an impact to the head which causes injury to the brain and results in long term damage and impairment.

hospice - a philosophy of care that focuses on relief of symptoms, pain control, and providing a variety of supports through the period of dying.

Huntington's disease - a genetically linked neurological disease that leads to loss of movement in the face, arms and legs, loss of speech and use of the brain and leads eventually to dementia.

incontinence - inability to control bowel and bladder functions.

leukemia- a fatal disease of the white blood cells and blood-forming organs.

multi-infarct dementia - dementia due to loss of blood supply in the brain after a series of small strokes.

hydrocephalus - enlargement of the head due to the accumulation of fluid around the brain.

paranoia - behavior characterized by extreme suspiciousness and delusions.

Parkinson's disease - a neurological disease that leads to tremors, muscle rigidity, and slowing of all body motions.

premature aging - physical changes related to aging occurring ahead of what would be normally expected for a person's chronological age.

probable Alzheimer's disease - a level of diagnosis that is supported with relative certainty by the progressive deterioration of specific cognitive functions, motor skills, and perception, impaired activities of daily living and altered patterns of behavior, family history of similar problems, and laboratory findings of physical changes.

related disorders - conditions that are similar in nature to the main condition but occur for a different reason.

sensory-motor - those aspects of movement and sensation.

subcortical dementia - dementia associated with impairment of the lower part of the brain that affects speed of motor and mental processes.

subdural hematoma - a hemorrhage under the dura or membrane covering the brain and spinal cord.

Some things to remember. . .

Alzheimer's disease is a slowly progressive degenerative disease that eventually results in death. It is not part of normal aging.

Symptoms of Alzheimer's disease include losses in language, recent memory, orientation, activities of daily living, and changes in personality.

Many conditions that are treatable produce symptoms that are similar to Alzheimer's disease. It is important for adults showing signs of dementia (loss of mental disabilities) to have a complete medical workup.

Persons with a developmental disability are at greater risk for Alzheimer's disease if they are older than 40 and have Down syndrome or come from a family with a history of Alzheimer's disease.

Persons with Down syndrome appear to age more rapidly than other persons in the general population and thus are at greater risk for Alzheimer's disease than are peers of similar age.

Although only some 20 to 40 percent of adults over age 45 show the behavioral signs associated with symptoms of Alzheimer's disease, nearly all show the brain changes associated with Alzheimer's disease at death.

A complete evaluation and several periodic reviews of behavioral changes are necessary to develop a diagnosis of Alzheimer's disease.

These should include, at minimum, a comprehensive history, physical, neurologic and neuropsychiatric assessments, and a mental status exam.

Persons who have Alzheimer's disease may be helped by care management programs. These help to maintain the person's highest level of functioning.

To minimize confusion and agitation caused by dementia, changes in the residence and other familiar activities should be avoided.

Staff, family and care providers should adapt the plan of care to reflect the person's diminishing abilities and focus on the person's remaining strengths.

Many services are available to support the care that staff and family provide to an individual with Alzheimer's disease, including home care, adult day care, overnight and weekend respite, hospice, financial and legal aid, and family support groups.

Published by the NIH (c) copyright 1992


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