This article is the kickoff in a seven-part series on common sense dementia care. This series will discuss principles which can improve quality of life, not only for people with dementia, but for their caregivers as well. Respect is the first topic in this series.
R-E-S-P-E-C-T is also a helpful mnemonic (memory device) for remembering all seven of these precepts:
The Seven Common Senses of Dementia Care
Put Your Oxygen Mask On First
The safety announcement made before an airplane flight advises that in case of an emergency, passengers should put their oxygen masks on before assisting any traveling companions. Yet when it comes to caring for people with dementia, caregivers can be so preoccupied as to neglect their own needs. Studies show that caregivers of people with dementia have an even greater risk of illness (including depression) and higher rates of hospitalization than do the caregivers of people requiring assistance for reasons other than dementia (e.g., stroke or cancer).
Caregivers need to exercise good self-care in order to successfully care for others. They should be mindful of their own needs and limits in order to help avoid becoming sick or burned-out. Otherwise, they may become unable to care for their loved ones with dementia—or anyone else, including themselves. It is important that caregivers seek help when needed (more on this topic in the next installment of this series). Caregivers should attend to their own health and well-being. Because if a caregiver isn’t doing well, neither will someone in their care. Caregiver, respect thyself.
Honor and Respect
Respect is afforded by honoring a person’s dignity, autonomy and best interests. Most types of dementia progress gradually, causing a loss in a person’s ability to function independently and make decisions. The slow progression of the illness has a silver lining. If a diagnosis is made early enough, there may be time to facilitate long-term medical, financial and legal planning. (This doesn’t justify putting such planning off, however. All of us should have such arrangements in place.)
The typically gradual decline of dementia also guides care. Rather than an “all or none” approach, supervision and assistance should be individualized and provided in an incremental fashion over time. Adjustments may be made on as-needed basis allowing for a person’s abilities, behaviors and preferences, as well as their safety and well-being. For example, someone with dementia who enjoys traveling may no longer be able to fly alone but may be able to travel accompanied. Respecting a person’s independence in functioning and decision-making means stepping in only to the extent necessary (e.g., to prevent harm).
If someone with dementia seems unable to make decisions, consider simplifying the choice. For example, if a person with dementia seems overwhelmed by selecting clothing from a crowded closet, a better strategy might be to offer a choice, say between two shirts. Knowing someone well can go a long way toward understanding, remembering and honoring their current and previously-stated wishes and preferences. When assisting someone with dementia, try to set the stage for success, rather than for failure or frustration.
Don’t Try This At Home
Speaking of setting a person up for success, most of us can probably relate to “test anxiety” or the unpleasantness of having our imperfections pointed out. Quizzing someone with dementia or repeatedly reminding them of their diagnosis usually doesn’t help and may be hurtful or cause aggravation.
“Short and sweet” and “Show, don’t tell” are good rules of thumb. Keep answers and explanations brief and speak face-to-face. Instead of asking a person with dementia the date, consider showing the date on a wall calendar as part of a daily routine or give the date if asked. Leave testing to the doctor or other health care professional who may need to ask questions about the date, etc., in order to get a clearer picture of a patient’s cognitive (mental) status.
Respect is something we learn via
Much like acquiring a language and other skills, acting with respect may come more naturally to some people than others. However, each of us can listen, learn, practice and improve.
Employ a positive and proactive approach, rather than a reactive one. Prepare and build from past experience. Strive to avoid reacting negatively in a moment of crisis. But if you do, give yourself a break. Later on, you can reflect on ways to prevent the problem or things that could be done better going forward.
Caregiving is like traveling. The journey may be long, challenging and bumpy—or even turbulent—but it can be rewarding as well. Preparation and respect will make the ride go more smoothly. People with dementia and their caregivers deserve first-class treatment.
By Anne M. Lipton, M.D., Ph.D. Neurologist and Author of The Common Sense Guide to Dementia For more information on the Seven Common Sense of Dementia Care, see Dr. Lipton’s book, The Common Sense Guide to Dementia for Clinicians and Caregivers.