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A planned hospitalization or unexpected health emergency can occur at any point during the disease progression and may or may not be the result of Alzheimer’s or another dementia.

A hospital visit or overnight stay can cause anxiety or discomfort for the person with the disease. The change from home to an unfamiliar environment and the added stress caused by medical interventions may lead to increased confusion or disorientation. Knowing what to expect during a hospital visit can help make the experience more comfortable for everyone.

Plan ahead

In the early stages of the disease, the person with dementia is able to make decisions on his or her own behalf and should be included in all conversations about medical care. It is important to address wishes for health care, including emergency medical treatment, as early as possible so that family and care team members can confidently implement the plan in the event the person is no longer able.

As the disease progresses, it will become increasingly difficult for the person with dementia to understand the purpose of hospital visits and medical intervention, and he or she will be unable to participate in the health care planning process. The care partner or a member of the care team should always be present to explain the reason for the hospital visit or medical intervention as much as possible and provide support and act as an advocate on their behalf.

Consider the following:

Prepare an emergency kit with legal paperwork and current medical information. This information should be available in an easily accessible place such as in an envelope attached to the refrigerator. Some items include:

  • A list of current medications and allergies
  • Copies of legal papers (e.g. living will, advance directives, power of attorney)
  • Insurance information
  • Name and phone number of physician
  • Names and phone numbers of emergency contact and additional care team members
  • Request for brain autopsy or organ donation
  • A physician’s note confirming the diagnosis

Review current legal documents stating preferences for health care, including life-sustaining treatment. The following documents may help prevent an emergency decision from taking place and provide assurance that the wishes of the person with the disease are upheld.

  • Power of Attorney for Health Care: Names a health care agent to make health care decisions on behalf of the person with dementia when they are unable.
  • Living Will: A type of advance directive that includes preferences for medical treatment, including life-prolonging treatments.
  • Medical Release of Information: Ensures that a doctor can share information with the person’s family member or friend. This can be beneficial to those who are helping coordinate care.
  • Hospital Visitation Form: For those in a domestic partnership, hospitals in some states may enforce strict visitation laws and/or require special forms if relationship is not legally recognized in that state.
  • Do Not Resuscitate (DNR): A physician order to prevent any attempts at revival, particularly if CPR or defibrillation is needed.  Without it, medical professionals are required to perform resuscitation.

Prior to hospitalization

  • Share information regarding the diagnosis, other medical conditions or allergies with the entire medical team.
  • Provide information about personal habits, dietary preferences or any environmental needs like a private room that would make the experience more comfortable.

Ask questions

  • Which procedures will be performed and how? What are the risks and benefits, expected results and expected length of recovery?
  • Is assessment or treatment available at an outpatient clinic?
  • How long is hospitalization required?
  • If anesthesia is used, how will this affect cognition?
  • What are the visiting hours? Are extended hours available?

Hospital discharge planning

At the end of a hospital stay, health care providers will make recommendations for long-term care needs and recovery following hospitalization. A member of social services or a discharge planner may also be involved if the care plan calls for in-home services, referrals to rehabilitation facilities or outpatient services. Post-operational or discharge orders may involve several components including new medication, therapy, wound care or monitoring.

The following questions may help the individual and their car team to prepare for discharge:

  • Which activities may require more assistance after discharge?
  • When is it safe to engage in physical activity?
  • What is the safest way to manage pain?
  • Have medications changed and how often should they be administered? Which signs or symptoms are causes for concern? Who should be contacted?
  • Is a follow-up visit necessary? When will this occur?
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