Caring Checklist: What to Do When a Loved One With Dementia Is Hospitalized

Six important first steps for caregivers
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Whether it's for a planned procedure or a medical crisis, hospitalization can be chaotic and confusing for both family caregivers and a patient with dementia.

Your first stop at the hospital will be having your loved one formally admitted. A hospital admission is the process of getting the patient set up administratively for a room and bed, and clinically with the right medical orders and care plan. The admissions desk takes care of the first part: paperwork regarding insurance, contact information, and internal hospital planning.

The clinical admission is then done by the hospital doctors. This includes taking the patient's history and conducting a physical exam. Next, orders for monitoring and treatment are written based on the patient's needs. If your loved one begins in the emergency room, these evaluations will first be done there. But if an overnight admission to the hospital is necessary, the steps will be repeated, because the hospital itself has a different structure and staff, as well as a longer-term treatment vision than the emergency room. Although this process can seem confusing and redundant, think of it as dealing with two separate entities (even though the ER and the hospital may be physically attached and share the same name).

To help get your loved one's hospital stay off to the best start, take these steps during the admissions process:

1. Explain the person's dementia status.

Make sure it's clearly marked in your loved one's patient chart that he or she has dementia. But don't stop there. Also be sure the person's dementia status indicates whether it's the mild, moderate, or severe stage of dementia.

Also very useful: Explain what your loved one can usually do and not do for himself or herself. This will help make clearer to medical staff which changes during hospitalization are the result of something like medications, treatment side effects, or delirium, since hospital staff will likely be looking out for changes compared with the person's usual level of cognitive and physical functioning.

What to do when a loved one with dementia is admitted to the hospital

2. Bring a summary of ongoing medical conditions.

Whether your loved one has a complicated medical history or only relatively minor health issues, such as arthritis (in addition to the dementia and the problem that put him or her into the hospital), be sure to make an up-to-date list of all of these conditions, which you can give to medical personnel. Even if your loved one has been at this hospital before, information from a primary care doctor and specialists will often not have followed him or her there (unless it's an integrated health system, such as Kaiser or the Veteran's Administration). Hospital doctors need to understand which other conditions and treatments might affect care.

3. Bring all medications the person has been taking.

An up-to-date list (including the drug's name, purpose, dosage, and timing of doses) is important, but much better is to bring the actual containers with the medications. Don't forget any regularly used over-the-counter meds, herbals, or supplements.

An exact understanding of the medications the person takes helps the doctors identify side effects and drug interactions.

4. Stay available to give needed information.

Especially throughout the admission process, but also afterwards, it's best for a patient with dementia to have a caregiver (or other person familiar with his or her case) around at all times to provide an accurate history and to answer hospital staff questions. People with even mild dementia are not usually reliable reporters of their complaints or the timeline of their problems.

What's more, "face-time" with doctors is usually short -- and having a family member or other advocate to talk to is the most efficient way for them to get the information they need. To keep your loved one from feeling left out (those with mild dementia who still have some social awareness are most likely to mind), explain that you're going to fill in the doctor, "and then you can add whatever I forgot."

Important to know: There are other good reasons to have someone at the side of a patient with dementia as much as possible: to be an oasis of familiarity in a strange setting, to calm and reassure in ways the person responds to, and to help reorient the person to where he or she is and what's happening. If a family member can't be there, consider hiring an elder companion or personal aide.

What to do when a loved one with dementia is admitted to the hospital

5. Make clear who the medical decision makers are, and specify a point of contact for the hospital.

Be sure to let staff know which family member has been helping to make medical decisions. If your loved one has paperwork related to a durable power of attorney for healthcare, an advance directive, or a living will, bring copies to the hospital staff.

If your loved one has never filled out paperwork designating a durable power of attorney for health care, in most states the default surrogate decision-maker is the legal spouse. If there's no spouse, it's the next of kin, usually adult children or siblings. Especially when there's no paperwork on hand, specifying which family member has been taking on the medical-decision support role is helpful.

If your loved one's dementia is mild and he or she has been making major medical decisions, it's still a good idea to think now about who would be the surrogate decision maker, since a medical emergency can quickly render a patient unconscious and unable to participate in decisions, and the stress of hospitalization can cause dementia symptoms to worsen.

The hospital will also want to know who should be contacted to discuss key information or make medical decisions. This should either be the person who has durable power of attorney or the one who's already been helping with medical issues. Bear in mind that it's difficult for the hospital if several different family members keep calling in, even if they all have HIPAA releases. Streamline the process -- and avoid dangerous crossed wires or missed information -- by identifying one spokesperson.

6. Let hospital staff know what should be done in the event of a life-threatening medical emergency.

Most hospital doctors will check at admission to see if a person prefers to be "DNR," or "do-not-resuscitate." This means that if the heart stops, the person does not want to have CPR. (The alternative is usually to be "Full Code," which means that CPR, defibrillation, and breathing machines can be used if needed to revive a person.)

If you have any other paperwork providing guidance about medical care, such as an advance directive, living will, or POLST form, be sure to give a copy to hospital staff.

For more information on helping your loved one with dementia get through a hospitalization, you can: