What Could Be … Imagine The Possibilities

Instead of “We can’t because …” How about “What if …?”

In our last article, we described the dreary world of hopelessness and superficial relationships most nursing home and assisted living residents suffer through every day.

But … you might be thinking, “This isn’t what I saw when we chose this home for my mother.”

Unfortunately, what you saw during your brief visit usually doesn’t reflect what the residents experience by living there 24/7. Nearly all nursing homes have been designed for the convenience and efficiency of the staff. Their job is to provide hospital-like medical care at the lowest possible cost. And, most assisted living facilities are little more than large apartment-like buildings with common eating areas, a few medical services and few meaningful activities.

The good news is this is slowly beginning to change — to give residents a chance to feel like they are really at home. But, so far, only about 400 of the nearly 47,000 facilities in the U.S. have adopted the relationship-based approach that better serves all aspects of their residents’ physical, psychological and social needs.⁽¹⁾

What Can Be …

Colin McDonnell, a leader in “What Can Be …,” is the Care Services Area Manager at UnitingCare Ageing’s Starrett Lodge in Hamlyn Terrace, north of Sydney, Australia. Colin has had a long career in aged care with a particular interest in person-centered care for people living with dementia. His programs have won The Positive Living in Aged Care Award, A Better Practice Award, and The Mental Health Services International Mental Health Award for intergenerational programs for people living with dementia.

Colin believes strongly residents should be participants in life, rather than just recipients of care. This video, filmed at Starrett Lodge’s dementia care unit, shows just what true Person-Centered Care is all about. It should be the model everywhere.

We all just want to be significant.
We all just want to know that we matter.

Simple concept, that. Self-worth. Self-esteem. Mattering to your friends, your family, your spouse, your children. Should be a given, shouldn’t it? We’re all created equal, we all have a place here, and we all matter. At least we should.

The concept in facilities like Starrett Lodge is to value the person, the individual — to support them to live their life as usual, as much as possible. On a physical level, residents need fewer medications, eat better, and yes, live longer. On a mental level, they also seem to have more joy. It’s a difficult thing to measure, but that is the most important thing.

On the other hand, the institutional model used by the vast majority of facilities that provide long-term care has well-defined measurements, focused mostly around quality of medical care issues such as what percentage of residents:

• have bed sores;
• are in moderate to severe pain;
• have one or more falls with serious injury;
• have had flu shots;
• are physically restrained; etc.

with outcomes posted on the government’s website for all to see. But they fail to measure the nuances of well-being and quality of life — healthy human behaviors such as the need to matter, to feel important to those they love, to feel heard or understood, to make contributions that make a difference, and so on.

Healthcare providers still don’t understand what person-centered care really is — it’s simply the latest “fad” in healthcare. It’s task-oriented stuff dressed up and called person-centered care. True person-centered care is about forming relationships — how much you know about a person so you can do things that assist and enable that person to still be a person, rather than taking over, controlling and managing their life. Instead, become that person’s advocate — be on tap rather than on top. You’re around if someone needs you, to support them, but you’re not on top saying you’re going to do this or it’s time to do that — to be a participant in life, not a recipient.

Focusing on Quality of Life is about making each day
as good as it can be, for the time that remains.

People who want to do for themselves, but feel they can’t for whatever reason, feel a sense of pride when being able to accomplish a task, even if doing so required help from his/her caregiver. Find out what their capacities are and nourish them.

Start with small, easy-to-accomplish steps
to build a pattern of achievement.

The more confident they get, the more they’re valued as a person, the more you show interest in them as a person, the more they understand who they are.

“We do not believe in ourselves until someone reveals that deep inside us something is valuable, worth listening to, worthy of our trust, sacred to our touch. Once we believe in ourselves we can risk curiosity, wonder, spontaneous delight or any experience that reveals the human spirit.”
~ Ralph Waldo Emerson

A great deal of the symptoms people have are not because of the disease in our bodies, but because of the way other people treat us. When people treat us as still being present, as still having capacities, encourage us, establish relationships with us, a great many of the symptoms we see in people in dementia care disappear or at least are substantially reduced, and they can be people who can be happy and engage in many activities.

You have to have something to look forward to — a reason
to get out of bed in the morning — indeed, a reason to live.

Hobbies, Interests and Activities

Today’s nursing homes and assisted living facilities tend to offer only activities that can be done in a group setting. In other words, no individual coaching and only those activities that require a low level of decision-making ability (group TV watching, group bingo, etc.). In other words, activities to keep residents occupied between meals and before going to bed.

How about offering a wider range of activities? For example, help each resident resume their favorite activities, hobbies and games — activities they enjoyed earlier in their lives. Or, perhaps, help them learn new interests. Here are just a few examples of group and individual activities:

• Afternoon Tea and/or Ice Cream Socials
• Arts and Crafts
• Bingo
• Board Games
• Book Club
• Bridge
• Card Games
• Ceramics
• Checkers
• Cooking and Baking
• Crafts
• Crochet
• Discussion Group — Memories / Reminiscing
• Dolls / Puppets
• Dominoes
• Embroidery
• Euchre
• Exercises
• Genealogy / Photo Family Tree (Ancestry.com)
• iPad / Tablet Lessons
• Jigsaw Puzzles
• Karaoke
• Knitting
• Mahjong
• Photography
• Outings (Movies, Beach, Petting Zoo, Restaurant, Antique Car Shows, etc.)
• Pinochle
• Quilting
• Quizzes
• Scrapbooking
• Sewing
• Sports on TV — “Guy’s night/afternoon out” — Baseball, Football, Soccer, Nascar, Tennis — with non-alcoholic beer — Game/Race of the week
• Tai Chi
• Volunteering to Help Other Residents (Companions, Tutors)
• Wii Bowling
• Writing
• Yoga

How Can Nursing Homes and Assisted Living Facilities Transform Their Care Models Into Relationship-Centered Care?

First —

• Accept that relationship-centered care will be slightly more expensive — initially — than your current care model. But based on the experience of other facilities, these expenses will stabilize or even go down over the long term.
• Nurses, CNAs and other caregivers must be retrained.
• Wages must be increased to attract better, more caring caregivers.
• Replace caregivers who are there just because they need a job with empathetic people who want to build a career.
• Compete on quality of care, not price.
• Establish a goal of making life more wonderful rather than less horrible.
• Make changes slowly, one step at a time. If you try to change everything at once, you may fail. At times, your carefully pre-planned schedule will be completely disrupted. Get over it and move ahead quickly with what new has to be done.

Second —

• Don’t think of your residents as patients. To do so automatically places them in a subordinate position to the people who assist them. Instead, they are people with declining capabilities who are no less whole than “healthy” people. Being elderly does not change the fact they are human beings. They have feelings. They are not second-class citizens. They are different, but different does not mean worse. They are people who deserve to be respected, who have their own hopes, wishes, desires and needs, and who need just the right amount of assistance to help them live as independently as possible.

Third —

• Recognize that your residents fall into two categories:

1. those who chose to help themselves to the best of their ability; and

2. others who withdraw and wait for whatever life sends their way (sometimes because “healthy” people ignore them or treat them as objects, not people).

However, as perceived conditions improve in your facility, and other residents become happier, more and more of the second group will join the first group.

Fourth —

Don’t fall into the trap of teaching your residents to be helpless — helplessness is learned and is very difficult to “unlearn.”

Don’t automatically do something for a resident because:

• they do it too slowly
• your CNA assumes they can’t do it
• your CNA is in a hurry
• they defer to your CNA because of your CNA’s impatience

Instead, help them, but only to extent they need it. “Would you like some help with that?”

Fifth —

• Recruit and train people from outside your facility to become volunteer companions to your residents. Consistently assign the same volunteer to each resident to allow true friendships to develop. Have each volunteer spend time with their respective residents to really get to know them as people, not as numbers on files.

Sixth —

• How “self-energized” are your residents? Residents who are active and community oriented always do better than those who stay in their rooms all day. Lack of face-to-face contact almost doubles depression risk for older adults.⁽²⁾
• “No one looked at me as broken. I had purpose again. I adopted a new attitude. I couldn’t do everything, but I could do something. These people accepted me for who I was. I had value again …,” Donna Burdett, “I Am No Longer Broken“.

Thoughts to Consider

• However equal everyone may be under the law, society makes the uncomfortable judgment that some lives are worth more than others. Criminals? Yes. Elderly and Disabled? Yes, unfortunately! They are disposable because they’re too much trouble — they’re somehow less than whole people.
• Putting someone into a nursing home is — to them — comparable to incarceration, quarantine, detention, internment, segregation, World War II POW camps. They have no rights except those granted to them by the staff. (Technically, residents/patients do have certain legal rights. However, those “rights” do not really apply to their quality of life. Nor do residents perceive that they have any real rights. They simply expect to do as they’re told when they’re told to do it.)
• I saw and learned a lot during the days I was my mother’s primary caregiver — not only about her, but also about others like her who were caught somewhere in the progressive stages of dementia or Alzheimer’s, or were old, frail, sick and worn out. Far too many were simply dumped by their adult children into nursing homes and assisted living facilities, where they (their adult children) waited for their parents to die so they could collect their “rightful inheritance.”Sad, isn’t it.

My Vision —

Transforming present-day nursing homes and assisted living facilities into communities of people:

• who look forward to getting up every morning because they are fully engaged with life to the extent of their capabilities;
• who are involved every day in activities that have meaning for them (not “interactive” activities like bingo), including helping/assisting other community members;
• whose medical needs (physical and psychological) are attended to by a caring trained staff in a family home-like setting, and who tend to fade into the background when not needed;
• who are honored with the dignity to which every human being is entitled, regardless of physical or cognitive limitations; and
• that promote development of self-confidence and self-worth.

⁽¹⁾ The six aspects of a resident’s Quality of Life:

• Health / Fitness — How is your daily living affected by medical problems, disease, disability, disorder, pain or discomfort? Do you exercise regularly? What other physical activities do you do regularly? Do you have healthy eating habits? How is your strength and vitality?
• Intellectual — Are you able to keep up-to-date on current events, issues and ideas? Do you watch the news on TV, read books, magazines and newspapers, or use the Internet? Do you do crossword puzzles or other challenging games and activities?
• Sense of Purpose / Your Role in Life — Do you feel like your life means something, you have a sense of control of it, you contribute in a meaningful way, and you feel like you are participating in something larger than yourself?
• Social — Do you take part in activities with other people? In person? Online? Has your social activity increased, decreased or stayed the same in recent years? Or, do you feel lonely much of the time? How often do friends and family visit you?
• Emotional — Do you feel positive and enthusiastic about yourself and life? Do you look forward to getting up in the morning? Are you satisfied with your relationships with others?
• Spiritual — Are you a spiritual person? Do you have a sense of connection to something bigger than yourself, the sense of commitment, moral values and community? Do you find purpose in life and meaning in the little things you do everyday?

⁽²⁾ Lack of face-to-face contact almost doubles depression risk for older adults, Medical News Today, October 6, 2015.

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