Category: Articles

Written by Sarah Randolph; published in Kaw Valley Senior Monthly, July 2017, pg. 15

Alzheimer’s and dementia can be difficult, demanding on families, caregivers and individuals themselves. However, a positive whole person mode of care is emerging. Begin­ning with an ideology that is based on acknowledging but no longer focusing on the losses (loss of memory, loss of skills) an individual with dementia is experiencing. The focus is on what memories and skills remain intact and how to engage these. Providers embracing this positive, whole person model of care evaluate an individual for their demonstrable abilities and put together a specific plan for how to encourage the use of these daily.

George, age 72, has been diagnosed with vascular dementia by a health care professional. A traditional evalu­ation includes statements such as, “He is disoriented by his surroundings and will not recognize a familiar place such as his home,” “He cannot recall his address or phone number of 35 years,” “He cannot recall the day of the week or date,” “He does not recognize his grandchildren,” and “Despite his life­long work as a college mathematics professor, he cannot count backwards from 20 by twos.” Most long-term care facilities use similar language in their care plans, the documents that guide their care.

A positive, whole person evaluation includes statements such as “George remembers his home when cues are used with him,” “George recognizes his wife, Carol, and his children, often by name,” “George can dress himself when seasonally appropriate clothing is available,” “George can feed himself and use the restroom on his own,” and “George remembers his own name and that he worked as a college mathemat­ics professor.”

Caregivers, often exhausted, often feel the changes that come with progressing dementia insurmountable. Providers skilled in dementia care can help create a supportive environment that helps the person with dementia succeed. Identifying challenges one by one is necessary as well as asking whether each challenge is a problem for George or is it defined as a “prob­lem” by a healthcare provider. Can each challenge be re-framed, redirected or viewed as a “new normal?” An exam­ple of this might be George pacing and walking constantly throughout the living and dining room seemingly unable to stop and sit down. This takes place at all hours of the day and night. His wife is experiencing symptoms of distress and anxiety and is unable sleep for fear George will walk out of the door in the middle of the night. While a difficult decision, the family decides to move him to a small memory care home to keep him safe and engaged, and to preserve Carol’s health. They want to enjoy family life again.

The staff takes several steps to create a supportive environment for George. The clinical director evaluates George’s medication and obtains a social history of George’s beliefs, talents, and habits. Information about George’s preferences is readily accessible to the staff. The staff establishes a familiar environment, consistent cues, and a familiar pattern. They set his room up with many personal items he can use. They only put seasonally appropriate clothing in his closet. George is set up at his own desk with pictures of Carol and his children, a daily calendar that is changed each day and a set of math texts with challenging problems to “work” on. George has the opportunity to teach a class within his new environ­ment, even if his preference is to do so at 4 a.m. and the students are the staff members. He is asked by the staff daily about his progress in his work. When he does experience periods of pacing, he is not stopped or detained. And when weather is appropriate, he is encour­aged to do so outside in the secured garden on the walking path so he can soak up the sunshine and hear the birds. George is encouraged to take a walk on the outdoor fenced wandering path to maintain his physical exercise and con­nection with nature. George’s diet is monitored to make sure he is receiving enough calories to offset the physical exercise. When he chooses to pace and walk inside, George’s path is free from items he could trip and provides suffi­cient sturdy items he can steady him­self on. This failure-free environment eventually reduces George’s pacing and gives him a rewarding daily routine.

Carol is encouraged to join George for lunch and dinner, which is served family style with other residents and family members, every day. This allows a chance for the residents, family, and staff members to interact and support each other.

While it is normal to focus on what an individual has done prior to dementia but can no longer do, the new model of care supports what pleasures and capabilities are intact and crafts a day that is satisfying. A supportive failure­ free environment is one in which the individual with dementia can find suc­cess and family can experience joy with their loved one.

For further questions and resources, please call Sarah Randolph, Execu­tive Director, Bridge Haven Memory Care at 785-371-1106 or visit www.mybridgehaven.com.

Published in Kaw Valley Senior Monthly – November 2018

November is National Alzheimer’s Awareness Month. Alzheimer’s Disease (AD) is a disorder which accounts for 65-80% of dementia diagnoses. Diagnosed by physicians and neurologists with detailed personal history-taking, testing, exams, scans and ruling out of other possibilities, AD is permanent, progressive and can lead to memory, judgment and personality changes. Other common dementias include vascular dementia, Parkinson’s dementia and frontotemporal lobe dementia. Currently, five medications are approved to slow the progression of symptoms but do not change the underlying pathology.

Affecting nearly 2% of the US population, research is moving quickly to find treatment and a cure for AD and other dementias. Regionally, Kansas City has one of only 31 National Clinical Research Centers in the country. Kansas is currently the only state without a State Dementia Plan, but a workgroup headed by the Kansas Department for Aging and Disability Services is presenting a comprehensive plan in January 2019. Locally, an Action Committee to Protect Kansans with Dementia is working to ensure Lawrence and Douglas County become leaders in good memory care practices.

What is memory care? Some memory care homes break the mold. Walking into a lovely sun filled home surrounded by trees, a fire crackling in the fireplace, many visitors are surprised. Two women, one who was a CEO, and another, a former teacher, are discussing the headlines while sipping coffee. One professor emeritus is writing and looking up from time to time to add his thoughts to the conversation. Simultaneously, another professor is in a comfy chair by the oversized windows reading the NY Times cover to cover. Meanwhile, a gifted photographer who lives here, observes all with his camera and hangs new 8 x 10’s in the media room for all to enjoy.

Trivia contests to access intact long-term memories, karaoke competitions, daily exercise, music and pet therapy, and evening movies watched together are all staples in this setting. Family and friends are welcomed round the clock and encouraged to join for meals prepared in an open concept gourmet kitchen. Autonomy, dignity, humor and camaraderie are possible in a setting structured to support these principles. This is the ideal of memory care today.

Stigmatizing those with brain change is no longer acceptable. Person-centered care and culture change are taking place in some memory care homes and should be the norm rather than the exception. Based on an experiential model which views everyone as still capable of learning, experiencing pleasure and meaning rather than a medical model which views an individual as suffering a tragic disease. Care is focused on the whole person and is guided from the viewpoint of the person experiencing it. Individuals experiencing dementia value safety while maintaining mental and physical stimulation.

Life history and preferences are important. The more individualized the care, the better. Staff know what time each person likes to get up, how to fix their coffee and made-to-order breakfast and how to help begin a pleasant morning. A family must know that staff members truly care and be able to trust them, so they can return to their role as spouse or child. Living successfully with AD or another dementia related illness must be a partnership between an individual, their family and a supportive care home.

Empirical evidence developed by Dr. Al Powers states memory care homes should have one direct care staff member with every four individuals, yet regulations may only require one staff for sixteen individuals. A quality memory care home should employ all their own staff and not meet staffing needs by using agency staff. The management staff should instill a feeling this is more than a job, it is a sacred trust. Commonly, institutions do not meet these expectations. Some of my most brilliant friends are living with a dementia related illness. I know a fine man who is engaging, funny and brilliant.He speaks ten languages and yet lives in one of our memory care homes. He may not remember he’s had breakfast already, but he knows what is important. He knows when someone is kindly and respectively offering him assistance. He knows how to enjoy himself. He feeds the fish in our pond, perhaps forgetting he has fed them several times before that same day. He likes to be outside listening to the birds and the wind in the trees, his face warm with the sunshine or in winter, sitting by the fire enjoying his adult son’s visit. He tells amazing life stories and in turn laughs at every joke over dinner with his friends here. Humor is frequent, joy is deep, living well is possible with a dementia related illness while residing in a supportive memory care home.

Written by Sarah Randolph; published in Better Senior Living, June 2018, pg. 15

Caregiving presents many challenges related to one’s physical, emotional, and spiritual well-being. A caregiver faces living on the ragged edge from lack of sleep and constant worry that come with being a caregiver. In addition, isolation and self-neglect are often part of the caregiving journey. If that weren’t enough, after giving day in and day out, many caregivers find themselves facing the toughest part of being a caregiver: guilt. Although it is a natural feeling for caregivers, it is important to consider whether guilt is ever a good thing.

As one of the most uncomfortable emotions, guilt can be useful to modify or improve behavior. It can alert us to the fact that some part of our caregiving that isn’t aligned with our personal principles. Feelings of guilt can be precursor to action. It often serves as a signal, that we are considering a change, even if only subconsciously. It may also be telling us that we will not be able to maintain this level of caregiving forever and that it is time to ask for help, hire in-home care, or investigate long-term care. One may feel guilt from even considering these changes, but it is important to pay attention to these signals that the time has come to address what may become a necessary reality.

While feelings of guilt can be useful at times, often they can become counter-productive and harmful. Guilt felt by caregivers can zap energy that is in short supply. Unaddressed feelings of guilt can breed resentment and reinforce anger about the caregiving situation. When left unresolved, guilt can become overwhelming and immobilizing. While many caregivers have an abundance of guilt, awareness can help to combat these natural feelings. Here are a few things to consider when facing feelings of guilt as a caregiver:

1. Choose to accept negative feelings and realize they are part of the caregiving journey. As a caregiver, you may feel irritability, desperation, and exhaustion along with other negative emotions, including guilt. This is natural and normal.
2. Caregivers often feel guilty about addressing their own needs. Treat your own physical health, as well as anxiety and depression, by seeing your doctor regularly. Make sure your doctor knows you are a caregiver. Having an individual dependent on you is stressful. Do not let their health needs overtake your own. If you aren’t healthy, their support system crumbles.
3. Caregivers should allow the individuals they are caring for to participate in their own care, even if this means that certain tasks take much longer. With creativity and reasonable expectations, everyone who contributes to their own care will benefit from the resulting boost in self-esteem and confidence. Even small successes will make both of you feel more hopeful and empowered. You may be surprised at how powerful allowing your loved one to participate in care can be.
4. Ask for outside help. Do not shoulder the entire burden. Call a church, service club, volunteer organization, or ask a neighbor, friend, or family member to give you a break. Do not worry about what other people think. If they have not yet been a caregiver, they will likely become one at some point. Even a 30-minute walk or nap will provide you respite and give you fresh eyes with which to see your loved one. A particularly appropriate saying comes from mindfulness practice: It is not selfish to refill your own cup so that you can pour into others. Self-care is not a luxury. It is essential.
5. Find your peers. Caregiving for a dependent person is isolating, and often well-meaning family and friends cannot truly understand what you are enduring. Support groups are a worth a try even if you have never been to one. The act of being in a room with others who are traveling a similar journey can be renewing and uplifting. Surprising to many in support groups is when there are humor-filled moments and wry observations. Allowing yourself to laugh with others at the complexity and absurdity of life is okay, and you should not feel guilty about doing so.
6. Breathe. When facing ongoing stress, we tense up without realizing it. Deep breathing can be done anytime, anywhere. Research shows deep breathing has immediate effects on your brain, heart, and immune system. Dr. Esther Sternberg, a physician specializing in stress, explains the relaxation response is controlled by the vagus nerve. “Think of a car throttling down the highway at 120 miles an hour. That’s the stress response, and the vagus nerve is the brake. When you are stressed, you have your foot on the gas, pedal to the floor. When you take slow, deep breaths, that is what is engaging the brake.”

Finally, remember that regardless of your caregIvIng circumstances, you are giving all you can and let that be enough. Put effort into banishing non-constructive guilt feelings and remember to give yourself grace. Don’t ignore feelings of guilt that may be a signal that it is time to seek more support, and don’t let natural emotions fester into something that is counter-productive or harmful.

Sarah Randolph is the Executive Director of Bridge Haven Assisted Living and Memory Care.