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If you are diagnosed with Alzheimer’s disease (AD), it is important that you and your family members begin to make plans and decisions as soon as possible regarding your future care and treatment. You may eventually begin to lose the ability to do some tasks for yourself and will need a caregiver to help you. This caregiver may be a family member, friend, or hired health professional.

In the vast majority of cases, the primary responsibility for the care of patients with AD falls on a family member, usually a spouse. Over time, as the condition progresses, the spouse caregiver will find it more and more difficult to meet the needs of his or her loved one without additional help. Eventually, care becomes so burdensome that placement in a nursing home may become necessary.

A study of spouse caregivers of patients with AD showed the value of caregiver support. Nursing home admissions were delayed in those spouses receiving counseling, encouragement of weekly support group participation, and the availability of telephone counseling at any time.

Lifestyle changes that can help you function as the disease progresses fall into two categories:

As a person with Alzheimer’s disease, your abilities will gradually decline. You will be unable to address planning, caregiving, and treatment issues. The following guidelines apply to you, as long as you are able to be involved in planning, and to your family and caregiver.

Legal and financial planning should be done as soon as possible after diagnosis. Rely on trusted financial and legal advisers to set your affairs in order.

As the disease advances, you may not be able to make assessments about treatment and other healthcare issues. It is important to make your wishes known to your family and doctor early. In addition, choose a healthcare proxy (someone you trust to make health decisions for you when you are unable to do so yourself) and/or complete a living will.

A study found that cognitive function and brain efficiency may be improved by simple lifestyle changes such as:

Researchers hypothesize that such improvements may delay the onset of Alzheimer’s disease and perhaps even lower the risk of developing the disease. Talk to your doctor about how you can incorporate these changes into your routine.

As the disease progresses, though, your moods, capabilities, and behavior will change. That is why it is important for you to make make arrangements for daily care, learn how to adapt your home environment for safety, and research available community services. These steps, when done early, will help make the transition smoother for you and your caregiver

Although healthcare facilities may not be needed immediately, it is important to research your options. This way, you or your caregiver can find a place that matches your philosophy of care, location, and financial capacity.

As the disease progress, your abilities will decline, leaving you unable to address a number of issues on your own. Thus, the following general guidelines are directed toward families and caregivers.

People with Alzheimer’s disease may become agitated and disoriented as the condition worsens. Therefore, keeping the home environment consistent, quiet, and restful is important in preventing and alleviating possible triggers of agitation. Some methods to create a calm environment include:

  • Develop a daily routine
  • Keeping noise levels to a minimum
  • Maintaining consistent placement of furniture and familiar objects
  • Providing a well-lit environment during the day
  • Providing orientation cues in and around the house (clocks, calendars, phone list with names, appointment diary, meal schedule)
  • Limiting caffeine intake
  • Providing opportunity for exercise
  • Developing soothing rituals
  • Encouraging close family and friends to visit

It will be very important to adapt the home for personal safety to prevent injury to a person with Alzheimer’s disease. There are many organizations that can provide detailed information on how the home may be adapted. Home safety changes include:

  • Installing locks on cabinets containing medicines, alcohol, guns, or toxic substances
  • Removing electrical appliances from the bathroom to prevent shocks
  • Installing grab rails to avoid falls
  • Removing throw rugs to prevent falls
  • Setting water temperature to 120°F (49ºC) or lower to avoid scalding
  • Ensuring proper lighting

People with advanced stages of the disease will not be able to take care of their own hygiene and personal comfort needs. Caregivers will need to frequently monitor:

  • Hunger and thirst
  • Emotional state (especially looking for signs of depression)
  • Constipation
  • Full bladder
  • Fatigue
  • Infections
  • Pain
  • Immobility
  • Skin irritation

Memory aids may be very useful in the early stages of Alzheimer’s disease and may allow a person with Alzheimer’s disease to remain independent longer. Some examples include:

  • Writing out a list of the day’s activities
  • Posting instructions on how to do simple tasks, such as using the telephone
  • Writing out important phone numbers, and keeping them in one or more familiar places
  • Writing out the address and directions to the home and keeping them in a wallet at all times

You or your caregiver should notify your doctor of any major changes or deterioration of behavior or symptoms. Let your doctor know of any adverse effects of medicines.

References:

Alzheimer’s Association website. Available at: http://www.alz.org/.

American Association for Geriatric Psychiatry. Available at: http://www.aagpgpa.org.

12/5/2006 DynaMed's Systematic Literature Surveillance http://www.dynamicmedical.com/what.php: Mittelman MS, Haley WE, Clay OJ, Roth DL. Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology. 2006;67:1592-1599.

Last reviewed September 2013 by Rimas Lukas, MD

Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.