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Advocating for a Loved One with Dementia

How to Approach Hospital/Facility Staff with Care Concerns

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Updated February 29, 2012

Throughout the challenge of Alzheimer’s disease or another dementia, there often comes a time when our loved ones end up spending some time in a hospital, rehabilitative setting or long-term care facility (nursing home). During that time, your role as family member, friend, responsible party, next of kin or power of attorney becomes quite important, especially if your loved one’s memory and judgment are quite poor.

Perhaps the scenario is one where everything has gone very smoothly: excellent communication, fantastic medical help and tender loving care. If this is your experience, take a moment to thank the staff for the fantastic job they have done.

If your experience has not been quite that ideal, what are the steps you should take? How do you advocate for someone who has a diagnosis of Alzheimer’s disease? What approach is most helpful and effective?

Start with These Nine Suggestions:

  • Approach with Kindness and Respect.
    The vast majority of the time, the staff caring for your loved one really care about people or they wouldn’t have chosen this profession. While they may be hindered by limited time or a lack of knowledge about your loved one’s history, most staff will be glad to help if asked. Your kind approach will be appreciated and can go a long way in a busy environment.

  • Set Emotions Aside.
    Wondering if a loved one is getting the right care can stir up strong feelings. We feel ready to take on the world to make things right. While the motivation behind these emotions is positive, approaching someone for help when we’re all riled up is likely to backfire. People often respond to emotion with more emotion, and it can be difficult to join together if one party is feeling attacked and defensive.

  • Work as a Team.
    View the facility or hospital staff as members on your same team, rather than opposing forces. Teamwork requires communication and a mutual goal, which should be providing the best care for your loved one.

  • Avoid Jumping to Conclusions.
    While it may look like the staff missed something or messed up, withhold your judgment until you know more. You may be right, but give them a chance to fill in the rest of the missing information.

  • Ask Questions.
    Ask to speak with your loved-one's nurse or physician. Your loved one may not be able to ask questions, so this may be one way you can help. If you’re uncomfortable with her treatment plan or feel the medical staff are missing important pieces of information about her medical care and condition, ask for a few minutes of their time.

  • Write It Down.
    It can be difficult to remember your specific questions when your loved one is not feeling well. Take a moment to write them down so that when the physician or nurse has time, you are prepared for the opportunity.

  • Prioritize.
    Assuming the medical staff’s time is limited, choose the most important things to communicate to them. Perhaps you have three questions or pieces of information to pass on to the staff. They are more likely to really hear that information if it is presented clearly and briefly.

  • Ask for Help.
    Are you weary in your efforts to navigate "the system?" Sometimes figuring out who to talk with or how to help your loved one can seem like being in a foreign country, especially if you're not familiar with medical terminology or protocols. Consider asking another family member or friend for help, and devise a plan to work together. Perhaps that consists of setting up visiting schedules so that you get a break occasionally or asking someone to accompany you if you're meeting with staff to express your concerns.

  • Be Gently Persistent.
    Don’t give up in your quest for assistance. If you’re not getting answers or the help your loved one needs, be politely assertive and persistent. If necessary, you can ask to speak to the person in charge of the floor or facility. This should be done after you have first attempted to address the concern with your loved one's nurse or social worker.

During a hospital or other stay, your role as a family member or friend is a vital one. Although you may feel helpless at times, remember that advocating for the opportunity to provide information and ask questions is an important part of caring for your loved one with Alzheimer’s.

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