Alzheimer's Overview

Alzheimer's is a progressive, degenerative disease, a form of dementia, that attacks the brain, results in impaired memory, thinking, and behavior. To date, it can only be absolutely diagnosed after death, by an autopsy.

It is only one of several forms of dementia. A diagnosis of Alzheimer's disease for a living family member means that a definitive diagnosis for other causes of dementia have been ruled out. Other causes may be stress, depression, nutrition deficiencies, stroke, Parkinson's disease, drug side effects, or even AIDS.

Alzheimer's care facilities specialize in the care of patients with dementia. Other senior living environments (Congregate, Assisted Living, Board, and Care) may be appropriate for some residents in early, or even mid, stages of the disease. But unless the community has a specialized dementia unit, transfer to another facility will be required as the disease progresses. In fact, some Alzheimer's facilities accept patients only if they are mobile, or if they do not need to be treated for other ailments not normally treated at the Assisted Living level. For an idea of what that means in your state check Assisted Living regulations for your state.

Alzheimer's Care Facilities or Units in multi-level retirement campuses may take Assisted Living-level patients, or they may be geared to late stages of Alzheimer's support and offer a nursing home level of care. Costs are comparably different between the two levels, as between Assisted Living homes and Nursing Home costs. An Alzheimer's Nursing Home offers care more geared to the needs of Alzheimer's patients.

Federal regulations require any long-term care home or community to provide 30 days written notice and an appropriates discharge plan if they determine a patient is inapporpriate to remain with them. They are not allowed to simply tell you verbally that you must relocate a loved one!

What to watch for and what to do

What should you do if loss of memory or confusion is evident, and dementia or Alzheimer's is suspected in you, or a family member? Know the 10 Warning Signs of Alzheimer's Disease (as identified by the Alzheimer's Association) to avoid jumping to conclusions or denying that there is a possibility of Alzheimer's that should be professionally evaluated:

  • Memory loss
  • Difficulty performing familiar tasks
  • Problems with language
  • Time and place disorientation
  • Poor or decreased judgment
  • Problems with abstract thinking
  • Misplacing things
  • Changes in mood or behavior
  • Changes in personality
  • Loss of initiative

If you recognize any of these warning signs, contact the local Alzheimer's Association Chapter for guidance and help with diagnosis and Alzheimer's support. Your Chapter can be found from the National Alzheimer's Association website or at 1.800.272.3900.

The Alzheimer's Association can help with:

  • How to select a physician and other professionals involved in the diagnosis and treatment of Alzheimer's or other dementia.
  • Ideas for environmental adaptations that can assist patients to function better in non-institutional environments.
  • The family's need to inquire about long term care options early in the disease process.
  • Ideas for types of respite care options for caregivers.
  • Information regarding caregiver support groups in your area.
  • Information regarding research programs that might be available in your area.
  • Information regarding Alzheimer's support groups in which patients talk openly about having the disease and take a proactive approach, for as long as they are able.
  • Information regarding Alzheimer's support groups in which patients concentrate on brain stimulus and hand/eye coordination activities and offer social interaction.
  • Information regarding private research groups in your area that may be working with Alzheimer's.

As mentioned above, we recommend contacting your local Alzheimer's Association Chapter, found on their website or via phone at 1.800.272.3900.

Progressive manifestations of the disease

  • Loss in short term memory
  • Wandering
  • Episodes of agitation
  • Depression
  • Disorientation and confusion
  • Incontinence
  • Loss of weight
  • Sleeplessness
  • Forgetfulness regarding functions of daily living

Home Care Option Considerations

  • Can you make the environment secure and safe?
  • Can you hire services to come into your home to help care for the patient and provide you with respite? Think about the availability of nurses, home health aides, homemakers, and senior companions in your area.
  • Is there a senior adult day care facility available?
  • Are there opportunities for social interaction, mental stimulation, and recreation for the Alzheimer patient?
  • Can the caregiver get respite care?

See our Aging in Place page for more considerations.

In considering placement, options the environment should:

  • Be designed for dementia and Alzheimer's patients.
  • Encourage wayfinding through patterns, colors, and cues.
  • Provide for safe wandering indoors and outdoors.
  • Provide furniture groupings encouraging human interaction.
  • Provide overall, even lighting.
  • Include areas of privacy for residents.
  • Include identified and accessible safe bathrooms.
  • Private areas for families to interact.
  • Offer opportunities for nurturing and comfort.

Components of a special care unit to consider when shopping for a community:

  • Is the facility dedicated to dementia and Alzheimer's care? If not, do they have a separate wing?
  • Do they offer specialized Alzheimer or other dementia care?
  • Is the facility location convenient for you, the caregiver?
  • Is the environment calm and pleasurable?
  • Is there secure outside space for use by the residents?
  • Is private space personalized and respected?
  • Does the mission statement include benefits for your family member?
  • What licenses does the facility have? State licenses? Medicare certification? Medicaid certification? Private accreditation?
  • Are other residents' functional capabilities similar to your family member's?
  • Is patient assessment done by an interdisciplinary staff to determine individual needs?
  • Will re-assessment be done at regular intervals?
  • Do you feel you can establish a caregiver partnership with facility staff?
  • Are residents' rights addressed?
  • Is respect shown for resident's dignity in physical psychosocial, spiritual and emotional areas?
  • Does medical care and supervision seem sufficient?
  • Are behaviors accommodated without the use of restraints?
  • Are fees and charges competitive with nearby comparable facilities?
  • Will staff honor advance directives such as Durable powers of attorney?
  • Are nutrition and eating needs of residents accommodated?
  • Is there a full daily schedule of therapeutic activities?
  • Are residents active and engaged in activities?
  • Will diminished abilities and disease progression result in transfer or discharge from the facility?
  • Is late-stage care and illness addressed maximizing functional abilities?
  • Are research opportunities explained?

Alzheimer's, Dementia & Driving

Driving represents independence, competence, and control. It's a means to buy necessities, be productive, stay connected to family, friends, and the community and to access healthcare. Concerns about driving often surface during the early stages of dementia when individuals are still independent and able to manage daily activities.

Alzheimer's is not like other "changes" in later life that affect driving, such as eyesight problems and slow reaction times. Many older adults who don't have dementia can assess their driving changes without family intervention and do make gradual changes to the way they drive. Many are able to continue driving safely throughout their life. With dementia, an individual's capacity to assess his or her driving ability diminishes. They are especially likely to minimize the complexity of driving and overestimate their abilities. They may make excuses for their high-risk driving.

Those with Alzheimer's Disease and other dementias experience gradual and somewhat unpredictable progression in function loss. Cognitive functions critical to driving, decline; such as judgment, reaction time, and problem-solving abilities. Other areas of decline are physical and sensory, and they also increase driving risks.

As driving and assessment skills decline, the risk of serious loss or injury increases. Caregivers must assume the responsibility for monitoring and regulating the driving of the person with dementia. They need to realize that if there has been a diagnosis of Alzheimer's or dementia, a victim of an accident they cause will not stop their suit at the liability limit of the auto insurance. If negligence or a prior knowledge of incompetence can be found they can sue for all a person possesses. Auto insurance will indicate you did not tell them of the medical diagnosis, and you could be on your own to pay the claim. Fortunately, in many cases, people with dementia begin limiting where and when they drive. The following signs indicate that a person with dementia is modifying his or her driving behavior:

  • Driving shorter distances.
  • Driving on familiar roads.
  • Avoiding difficult unprotected left-hand turns.
  • Avoiding driving at night, in heavy traffic, on heavily traveled roads or during bad weather.

Resolving the driving issue involves not only substituting other drivers or modes of transportation, but also addressing the reasons people want to go places. Caregivers can look for ways that others can help meet the physical needs of the person with dementia, such as:
  • Arrange to have prescription medicines, groceries, and meals delivered, reducing the need to go shopping.
  • Have hairdressers make home visits.
  • Schedule people to visit regularly, either as volunteers or for pay.
  • Arrange for friends to take the person with mild dementia on errands or to social or religious events.

While caregivers consider ways to reduce the need to drive, it's also important to remember the social benefits the person with dementia derives from interacting with others. As one person reflected: "When I went to the bank or drug store, I would stop at the local bakery for some pastries. Sometimes it would take most of the morning because I could take my time and chat with different friends along the way." If caregivers consider the social needs that were met through driving, the transition to not driving will be more successful.

When possible, include the person with dementia in the planning process. People are better able to respond to appeals to safety during the early stages of Alzheimer's Disease or other kinds of dementia.

Caregivers need to remember that family members follow long-established patterns for making decisions. It is unrealistic to think that patterns will change when handling a difficult issue like driving safety. Caregivers can work to minimize friction by listening to different opinions and appreciating what each person can contribute, even if it differs from their point of view. Disagreements in families often result when individuals do not have the same opportunities to assess driving abilities. Having factual information about driving behavior does not guarantee families will reach a consensus on when to limit driving. However, frequent, open communication about specific, observed behaviors and concerns may help to lessen differences. Everyone involved in caring for the person with dementia can help by focusing on the key issues; the self-respect of the person with dementia and the safety of everyone on the road.

Information on driving and Alzheimer's was Printed with permission from The Hartford, Hartford, CT 06115.

Additional information resources

Alzheimer's Clinical Trials a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current studies.

National Alzheimer's Association website or at 1.800.272.3900. They can lead you to the closest affiliated local chapter.

BrightFocus Foundation funds research seeking cures for Alzheimer's disease, age-related macular degeneration and glaucoma, and provides the public with information about risk factors, preventative lifestyles, available treatments and coping strategies.