My grandmother lived to the age of 107.  She was vital and active until about three years before her death, when she needed more care than I could provide, and she moved to a nursing home.  She was a dignified, independent woman who was very status-conscious.  I cringed (and sometimes spoke up) every time a caregiver called her “Florence.”  To everyone except close friends and family, she had always been “Mrs. Weisberg,” which was common usage for most middle-class women during the years of her adulthood.  In her individual case, calling her by her first name reduced her to being a child.

How we describe people is important.  When my husband Charles was diagnosed with Alzheimer’s, I read as much as I could about dementia.  I was struck by how many books and articles talked about “Alzheimer’s patients.”  Certainly, Charles had Alzheimer’s, but he was not a patient unless he was in a medical office or the hospital.  He was a person with Alzheimer’s.

Words matter.  The disability rights movement has emphasized “people first” language – for example, “a person with autism” rather than “an autistic person.”  Just as it is dehumanizing for hospital personnel to talk about “the kidney stone in room 314,” calling a person a patient just because they have a chronic disorder creates a narrow view of their identity.  Yes, Charles had Alzheimer’s.  He also had a love of The Moody Blues’ music, a taste for cheeseburgers, affection for our dog and cat, the hands of a carpenter, an interest in science and nature, and (thank heavens) a beautiful love for me.  Most of those characteristics endured in some form until the final stretch of his Alzheimer’s journey, and they made him the unique individual he was.

It is a tricky business to match your approach to the needs of a person with dementia, because the unspooling of adult behaviors occurs unevenly.  Your partner may no longer be able to manage a checking account, but they might still know very well what they want for supper.  You may need to take over their financial responsibilities, but you will want to offer preferred foods and choices for as long as your loved one can decide.  On the other hand, offering too many choices can be overwhelming once your partner can’t hold the information about alternatives in their mind.  In this case, it might be kinder to offer just a couple of choices, or to simply prepare food that you know your partner enjoys.  What matters is considering things from your partner’s point of view.

Virginia Bell and David Troxel, in their book The Best Friends Approach to Alzheimer’s Care, developed “An Alzheimer’s Disease Bill of Rights.”  They say,

Every person diagnosed with Alzheimer’s disease or a related disorder deserves the following rights:

• To be informed of one’s diagnosis
• To have appropriate, ongoing medical care
• To be productive in work and play for as long as possible
• To be treated like an adult, not like a child
• To have expressed feelings taken seriously
• To be free from psychotropic medications, if possible
• To live in a safe, structured, and predictable environment
• To enjoy meaningful activities that fill each day
• To be outdoors on a regular basis
• To have physical contact, including hugging, caressing, and hand-holding
• To be with individuals who know one’s life story, including cultural and religious traditions
• To be cared for by individuals who are well trained in dementia care

While many of these rights appear at first glance to be applicable to people who are in care facilities, they apply to people at home as well.  This may seem overwhelming to you.  I know it did to me.  As my husband moved into the moderate stages of Alzheimer’s, it became more of a challenge to help structure his day, to find meaningful activities, and to educate myself so that I was “well trained in dementia care.”  That’s one of the main reasons I am writing these blog posts – to help others fulfill these caregiving responsibilities without feeling isolated and worn out.

I’d add some other rights to this list.  Some of these are related to the rights listed above, but I think it is worth considering them separately:

• To have experiences and challenges appropriate for their level of ability
• To have privacy and respect for modesty to the extent possible
• To participate in family and community activities with support
• To be approached with a positive attitude by those who provide care
• To make choices when it is safe and appropriate to do so

I attended a conference that included presentations by dementia experts.  One neurologist, whose name I have forgotten, said something that stayed with me.  He said that often people attribute nearly every negative behavior of a person with dementia to their condition.  The neurologist said that it is important to remember that these folks are still individuals, and to search for causes of distress before simply dismissing reactions as being due to dementia.  Perhaps the person spits out food because they don’t like the taste, or acts belligerent because a caregiver is handling them a bit too roughly.  They may not be able to describe what is bothering them, but you can often figure it out if you observe closely and try not to make assumptions.  Those “expressed feelings” in the original Bill of Rights may not be expressed in words, but they still need to be taken seriously.

You can help others treat your partner with dignity by saying positive things that describe the person as an individual.  For example, Charles was very proud of having obtained a bachelor’s degree in computer science at the age of 53.  At some point, he could no longer remember that accomplishment, but he would beam with pride when I would tell the story of how he moved from a career as a carpenter to that of a network administrator in his fifties.  I also enjoyed telling my grandmother’s caregivers some details of her extraordinary life.  I think it helped them to treat her with a bit more respect.  Our stories are important, even when we have forgotten them.  You become the keeper of your partner’s stories when they can no longer remember, and you can use those stories to remind yourself of the qualities that made you fall in love, as well as to lift up your partner’s mood, and to help others see the person who may be hidden underneath the veil of dementia.