by Juliet Holt Klinger
28 September 2018

Last week, Juliet Holt Klinger, senior director of Dementia Care and Programs for Brookdale, was invited to be part of The Atlantic’s Disrupting Alzheimer’s event in Chicago. Juliet spoke about caregiving for a person living with dementia. Individuals, who serve as caregivers for a loved one with dementia, make up a group of approximately 15 million Americans that provide an estimated 18.4 billion hours of unpaid care each year. The value of this care is estimated at more than $221 billion. We sat down with Juliet to ask her a few questions about what she discussed at the event. 

Juliet discusses her personal experience with Alzheimer’s and what brought her to this industry and her career. 

  Q:  What’s one of the biggest misconceptions about becoming a caregiver for a parent or loved one who has been diagnosed with dementia?

A: I believe the biggest misconception people have when planning to care for another adult who is living with dementia is that most people really underestimate what caregiving will take, and what it’s going to take out of them. I always say, it takes two to make a successful relationship, so caregiving is really care partnering.

I think it’s important to think of caregiving as a partnership, which is why I refer to caregivers as “care partners.” Caregiver refers to a one-sided relationship where the caregiver is in charge and the person receiving care is passive. But care partnership implies a relationship based on cooperation and common goals. The person living with the disease is an active participant in their care.

In order to have a successful care partnership, it is important to have open and honest conversations with your loved one. When you face a diagnosis, take the time to talk to your loved one about their wishes. What do they want for long-term care? What is most important to them in their daily schedule? What makes them happy and what are their fears? Having these conversations early in the disease process will strengthen your care partnership down the road and ensure you are both confident in your decision making as the disease progresses.

Juliet discusses collaborations and raising the bar on care.

Q: What’s the appropriate time to consider a memory care community versus care at home?

A: It is important to know when it is time to move your loved one into a memory care community, and there are many factors to consider. For starters, I always encourage people to have open and honest conversations with their loved ones early in the disease process. Talk about their wishes and their goals for long-term care. Tour senior living communities and talk about options, this will help you make the right decision when the time is right.

Dementia symptoms may include behavioral expressions that can put the person living with the disease at risk. One of the biggest safety concerns for people living at home is wandering. Others can be a lack of recognition of care partners as helpers causing resistance to care, increased agitation, falls, and a decreased appetite or trouble eating. If you are worried about the safety or health of your loved one, it is time to consider permanent long-term memory care.

In addition, it is important to look for signs of caregiver burnout in yourself. If you are distressed, socially isolated or exhausted, then it might be time to consider memory care. 

Q: What are some of the ways Brookdale associates are trained in caring for residents with Alzheimer’s or dementia? You often mention person-centered care.

A: At Brookdale, we believe the person you are before a dementia diagnosis is the person you deserve to be after. People are living with dementia, not suffering from it, which is why Brookdale’s Alzheimer’s and dementia care programming is deeply rooted in person-centered care. Person-centered care focuses on creating feelings of belonging and purpose for each resident while preserving identity, dignity and a sense of self. Simply put, we put the resident and the relationship with them at the center of everything we do.

Here, no one is defined by their diagnosis. We get to know each resident personally and assign consistent care partners to work with the same residents each day. We learn each resident’s life story which includes information about their family, their occupation, their likes and dislikes and use that information to build a life full of meaning. If your mom always loved to garden, then she should still have the opportunity to garden in her new setting. Our communities are set up for safe engagement in daily activities your loved one always enjoyed.

When person-centered care is successful, there is often little need for psychotropic medications. Understanding our resident’s passions and stressors help us to anticipate the person’s unmet needs in order to prevent distress. By knowing the person well, we are often able to calm the resident by redirecting them to something they enjoy. For example, I remember one resident who was constantly entering the offices at the communities at the same time every afternoon and messing with the papers on the desk—when we looked at her life story it told us she had been a teacher—but it wasn’t until we really got to know her and were told that she used the leave school at 3 pm every day and go to a second job of cleaning the bank. Once we knew this was her history, we simply gave her a dust rag and she was very happy to straighten the offices every afternoon! This redirection was soothing and purposeful for her and worked significantly better than pharmaceuticals.

Brookdale dementia care associates are trained on the disease, of course, but more importantly on our person-centered approach to care and how to be a successful care partner. We foster a culture of coaching and have community, regional and divisional leadership available to teach community caregivers on how to be the best care partners possible.

Juliet discusses how dementia care programming is the way to alleviate symptoms, not create a cure. She talks about how important the environment is for those living with the disease.

Q: What about respite care? How can Brookdale’s respite care help both the caregiver and the person needing care?

A: With Americans living longer lives, many of these caregivers are adults who are providing uncompensated care to an aging parent.  Many of these caregivers are in their 50s and 60s themselves, often sandwiched between caring for parents while launching their own young adult children, and the task of caring for someone with chronical illnesses typically associated with growing older is an around-the-clock endeavor. Additionally, the physical, social and emotional toll of taking care of an older parent is often overwhelming.

That’s why Brookdale Senior Living offers respite care at all of our dementia care communities. Respite care is simply a break for caregivers. At Brookdale, it takes form as a short-term stay in one of our communities. Services are available to align with the need of the person receiving care, whether it is something as basic as help with activities of daily living or something more involved, like assistance with clinical issues.  Better yet, Brookdale’s respite stay guests enjoy the amenities of life in a Brookdale community, including activities, social events, dining, and other advantages.

As important as it is for the aging adult to have quality care and social interaction in a safe environment, it’s equally important for the caregiver to have a break and time for him or herself. Respite stays at a Brookdale community offer a much-needed break from the demands of taking constant care of another person. It gives caregivers a way to relax for a bit of time, however they choose. Maybe it’s a vacation, maybe is a staycation, but the fact remains that caregivers should take time to care for themselves.

If you missed Juliet’s appearance on the panel, you can watch it in its entirety below. 

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