Preserving Dignity in People With Dementia

Caregiver combing hair of woman with Dementia.
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Are you a caregiver charged with preserving the dignity of your residents? Or, perhaps you're caring for your loved one who's living with dementia at home. Sometimes, in the busyness or familiarity of caregiving, we can become insensitive to the little things that make a difference for the person receiving care. Being intentional in how you choose your words and actions can go a long way towards truly treating those you care for with dignity and respect.

Focus on Dignity

For most people, the answer to this question is obvious. We want the best for our loved ones and our residents. Making sure that they're treated with dignity and respect can improve their quality of lives, as well as that of the caregivers. As a caregiver, the satisfaction of a job well done is part of what motivates us.

In nursing homes (also called long-term care, sub-acute care or post-acute care facilities), treating residents and patients with dignity and respect is not only a feel-good practice, it's also a regulatory requirement for receiving funding from the Centers for Medicare and Medicaid. If the care facility is not in compliance with these requirements, they can receive citations and must write and implement extensive plans of corrections and sometimes pay fines. Here are some ways to promote the dignity of your loved ones or residents:

Use Preferred Names

If you're a caregiver taking care of a resident in a facility, find out from your residents what name they really prefer.

Don't give a nickname or use their first name if they prefer to be called "Mr. Smith." And, don't guess. Ask.

Don't Post Signs That Could Compromise Dignity

In facilities (or even in homes where caregivers may be coming in to assist with care), some people have chosen to place signs to remind caregivers of certain needs of the individual with dementia.

Signs expressing the personal needs of people who need help with incontinence products, for example, can compromise their privacy and dignity. Be sure to place those signs in private areas, such as the inside of a closet door or the communication center on the back of the person's bedroom door, instead of out in the open for visitors to see.

Sit When Feeding Someone Dinner

If the resident or loved one needs assistance at mealtime, sit down at the person's eye level to feed him, rather than standing above him. This provides a different feeling, one that conveys more of a compassionate, personal relationship with the person, as opposed to a multi-tasking staff member who is looking down on those they're helping.

Honor Personal Style in Clothing Choice

Be sure to take the style choices of your family member or resident into consideration when assisting them with dressing. For example, you can give them a choice between two sets of clothing. Or, you can purchase multiple shirts that are the same if he has a favorite jersey he likes to repeatedly wear. It's not about what you think looks nice; it's about honoring this person's choice and style preferences.

Cover a Catheter Bag

If your loved one or resident has a urinary catheter, ensure that the bag of urine is covered with a cloth catheter bag cover.

These can be homemade or purchased inexpensively online. Covering the urine bag helps prevent others from focusing on the fact that the person has a catheter.

Keep the Commode Clean and out of the Way

Perhaps your mother's bedroom is on the main floor of your home. If her friend is coming to visit, be sure to clean the portable commode and move it out of the main line of sight. This helps protect the dignity of your mother since others don't need to know that she needs assistance with using the toilet or has problems with incontinence.

Keep Incontinent Products out of Sight

Don't leave clean incontinent products out in the open.

Perhaps you've brought some absorbent pads to your father's house or are dropping them off in your resident's room at the facility where you work. Protect privacy by putting products away in a drawer instead of leaving them out in the open for others to see.

Promptly Address Any Incontinence

If a loved one or resident has had an episode of urinary or fecal incontinence, assist them as soon as possible in changing them into clean and dry clothing. And, if they can alert you beforehand about their need to use the bathroom, every effort must be made to respond promptly to prevent incontinence.

Speak to the Person, Not About Her

One of our pet peeves is when the person with dementia is ignored and those around her are asked questions about her. For example, don't ask daughter Sally, "How's Sarah feeling?" when Sarah is sitting right there. Ask Sarah.

Respect Resident Choice in Music, Videos, Television, and Radio

Don't just walk into the room and change the channel to something you'd like to watch or flip the music to reflect your tastes. Especially when someone has Alzheimer's disease or another kind of dementia and their communication ability is limited, caregivers might forget that the music playing is her favorite band from 1950. Respecting the person's preferences is not only the right thing to do, it can also help minimize the potential for challenging behaviors.

Knock Before Entering the Room

In a nursing home, knocking on the door is an important step before just barging into the resident's personal space. It's their home, so respecting that space is critical to preserving dignity for that person. In the same way, if you're caring for a loved one at home, knocking before you enter their bedroom is a way to honor and respect the individual.

Introduce Yourself

As you come in the room, state who you are and why you're there. For example, I could say, "Hi! It's Esther. I just wanted to check to see if you needed anything."

Don't Pull People Backwards in Wheelchairs

You may think it's the most expedient way to move someone whose legs might drag onto the ground, but pulling people backward is not acceptable unless it's an emergency. If you're not sure why this is a problem, try sitting in a wheelchair and not being able to see when and where you're being moved. Then, add the confusion and decreased visuospatial awareness of dementia, and you'll understand why this is a bad practice and doesn't protect the person's dignity or comfort.

Instead, explain that you're going to help move her chair down the hall. If her legs are possibly going to be dragging on the floor, don't push the chair until you have placed her foot pedals on her wheelchair and put her feet on the pedals. This will prevent injury from her legs suddenly dropping or getting caught in front of the chair.

Provide Adequate Clothing and Privacy

Have you ever seen a nursing home resident being pushed down the hall, sitting on a commode or in a wheelchair, wrapped in a sheet or shower cape? This may be the quickest way to get this person down to the shower room, but it doesn't allow for adequate coverage and comfort of the person. Similarly, what about the gentleman laying in his bed when visitors stop by? Whether at home or in a nursing home, the door or curtain should only be open if the person is completely dressed and able to receive visitors. Be mindful of their state of dress.

Ensure Excellence in Grooming

To the extent allowed by the person, make sure you're protecting their dignity by helping them look their best each day. This can be difficult when caring for someone with dementia who's resistant or combative with care, but when possible, take care with their appearance, hair, and makeup, styling their hair as closely as you can to their usual and preferred style. Men should be neatly shaved if that is their normal practice prior to the onset of dementia. Put yourself in their shoes and you may realize how grateful you would be if someone cared about these details.

Label Clothing Discreetly

Rather than writing with permanent marker in large letters that bleed through on the back of a shirt or on a pair of socks, make sure that if you're going to write your loved one's name on their clothing, you write it neatly in a discreet location such as the clothing label. Facilities often request that clothing has the resident's name on it, but it can be done in such a way that doesn't diminish dignity by labeling the clothing (which can feel like you're labeling the person) in this way.

Honor Activity Preferences

Meaningful activities, whether in people whose cognition is completely intact or in those with impaired memory and processing, can be a significant contributor to quality of life. If you're not familiar with the person for whom you're providing care, be sure to find out what types of activities and interests he really enjoys, rather than sending him down to bingo when he could instead be watching his favorite sports team in the playoffs.

Don't Use Elderspeak

Speak to the resident or your family member in a respectful and honoring manner, not as if you are addressing a two-year-old. This means that endearing terms such as "honey" or "sweetie" need to be set aside, and your tone must convey respect. Don't put your face inches from theirs and use a high-pitched voice like you might when cooing to a baby. Rather, give a warm smile, offer your hand and speak directly and as you would to any other adult.

Non-verbals and tone can sometimes convey just as much as the actual words you choose to say. How you choose to communicate with someone who's living with dementia can go a long way toward giving them the dignity they deserve.

Sources:

The American Health Care Association. Best Practices For Compliance Related To Resident Dignity In Skilled Nursing Facilities. http://www.fhca.org/members/qi/clinadmin/dignity2.pdf

Centers for Medicare and Medicaid. State Operations Manual. https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf.

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