Category Archives: Dementia Live

The Trauma of Relocation for People with Dementia

 

 

A sudden relocation from home for a person with dementia can be traumatic.

My husband and I have made the decision to right-size our lives and sell our house of 23 years. For many years now, I have anticipated this moment wondering how I would feel.   Surprisingly, it wasn’t a hard decision to make.  However, I recognize that moving day could be a different story.

The decision to relocate is one we made being of sound mind and body.  As overwhelmed as I sometimes feel about our move, it must pale in comparison to what people with dementia feel when they are moved to a different environment.

Easing the Trauma of Relocation

My husband and I will adapt to our new surroundings.  I will find a place for all of our things and make our new house into our home.  The people I love most will be with me,  including my fur-babies.  I’ll drive to visit my friends and attend the same church.  All will be right in our world.

This mile-marker in my life makes me think long and hard about what moving day must be like for someone with dementia.  I can’t even imagine.  The sudden loss of leaving the familiar and the people you love must be horrifying.

Stop and think for a moment how you would feel if someone walked into your home and said that you had to leave for a new place that you had not chosen for yourself.

Imagine your behavior.  Would you be crying, screaming, punching, kicking?

The AGE-u-cate Training Institute program Compassionate Touch begins with looking at life through the lens of someone with dementia.   We discuss the grief and loss that often accompanies a person with dementia when they move into a long term care facility.

Realizing that people with dementia communicate with us through their behaviors is a pivotal moment in Compassionate Touch and Dementia Live Training.

So how can we ease a transition into a long term care facility for someone with dementia?  Here are a few tips:

    • If possible, set up their new space with familiar items prior to move-in day.
    • Remain positive and keep your personal emotions in check.
    • Minimize chaos on move-in day by limiting the number of family members present to no more than two.
    • Allow the staff to immediately begin bonding with your loved one.
    • Refrain from prolonged day-long visits until your loved one is settled in and comfortable.
    • When your loved one says, “Take me home” don’t say, “this is your new home.”  Rather, “I understand how hard this is, and I love you.”

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a Certified Master Trainer with the AGE-u-cate Training Institute. Through her company Enlighten Eldercare,  Julie provides training and educational programs on elder caregiving for family and professional caregivers.  In addition, she is an instructor and the Interim Director of Gerontology at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.

The Importance of Education for Informal Caregivers

Members of the First United Methodist Church in Arlington Heights, IL attend an Eldercare Educational Program about Understanding the Continuum of Eldercare.

Today, family members and other private individuals provide the bulk of care for frail older adults. According to The National Alliance for Caregiving, approximately 34.2 million Americans have provided unpaid care to an adult age 50 or older in the prior 12 months.  The assigned dollar value of unpaid caregiving is a staggering $470 billion.

Informal caregivers are a critical link in the system of eldercare. The care and support that is provided delays, and may even prevent the need for institutional care. Equally, we must acknowledge the financial impact that the informal caregiving system has on our nation. Consider the increased stress on the Medicaid system without these caregivers.

The American Association of Retired Persons offers a terrific directory of resources available to family caregivers. There are many agencies, both public and private, that exist to provide resources for family caregivers. To that end, caregivers can access website links, pamphlets, resource guides, and a plethora of other informational sources.

Importance of Education for Caregivers

Yet, with all of these resources, so many family caregivers still feel lost and overwhelmed. I have observed many caregivers who don’t know what they don’t know.  In addition, it is paralyzing for them to know where to start.

Caregiver education should be a more robust component of our eldercare system.  Education that leads to increased knowledge is necessary so that people can feel empowered and access the correct resources.

Caregivers need to understand the process of aging.  As astutely stated by The Age-u-cate Training Institute, it is hard to care for someone that you don’t understand.  Consequently, when caregivers feel like they are in the dark, stress, and frustration ensues.  Therefore, helping caregivers to understand what is going on will better equip them to find the right resources and ask the right questions.  Knowledge is empowering.

To list, a sample of educational topics for caregivers:

Creating opportunities to provide knowledge will increase understanding and compassion, reduce stress, and strengthen the process of caregiving.  In addition, it will improve the relationships between caregiver and receiver.

 

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a Certified Master Trainer with the AGE-u-cate Training Institute. Through her company Enlighten Eldercare,  Julie provides training and educational programs on elder caregiving for family and professional caregivers.  She is an instructor and the Interim Director of Gerontology at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.

Wisdom from a Friend with Dementia

 

Seek the wisdom that can be lost under the weight of memory loss in persons living with dementia.

Dementia hit close to home for me recently. It had probably been six or so years since I had last seen a friend and former co-worker. He had fallen out of sight, and now I know why. I learned of his whereabouts and paid him a visit. It started with mild cognitive impairment that has advanced to late-mid stage dementia.

I was so glad that he recognized me. We had a wonderful conversation and reminisced about people we knew and past work projects. But, as time went on, he became lost in the conversation. He was evaluating proposals, preparing to consult, and critiquing management.

Always contemplating, analyzing, envisioning, planning. That is what this man did. The beautiful thing, he still is.  The wisdom is there when entering his reality.

Wisdom

My friend said some pretty amazing things. The first was when we were talking about purpose in life. “We all need to germinate something wonderful and wise,” he said. My friend is eager to share his wisdom, and being surrounded by people who will listen provides him purpose and quality of life.

Referring to the people who work where he lives, he said that it is just as important for him to know them as it is for them to know him. It pleases him when people call him by name. It is important to him that they know who he is, and he delights when introducing his caregivers by name.

The importance of relationships between care partners is something my friend taught others back in the day. In fact, he introduced me to David Troxel’s philosophy, “Best Friends Approach to Dementia Care.” I saw before my eyes how incredibly important that is for my friend.

It is comforting to know that my friend’s personhood, the things that make him special, are still there.  Dementia does not define him. He has long-term memories with attached feelings. He continues to teach others about dementia- both how to live with it and what it takes to provide good care with quality of life.

I asked if I could share his wisdom in a blog. He said he had to think about it and then asked what the distribution and market reach would be. Yep- always thinking.

May we always seek to know the person living with dementia, and let them know us too.  Seek their wisdom, you will learn much.

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a Certified Master Trainer with the AGE-u-cate Training Institute. Through her company Enlighten Eldercare,  Julie provides training and educational programs on elder caregiving for family and professional caregivers.  She is an instructor and the Interim Director of Gerontology at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.

Person-centered programs

Innovation in long term care communities: early versus late adopters

Innovation in the long-term care setting can take many forms. It can be a novel technology, an inventive volunteer program, or an innovative training class. No matter what the offering is, the willingness to try something new to benefit elders in the long-term care setting is always worth attempting.

In exploring new, innovative projects in the long-term care setting, there can be two types of adopters: early and late. Those communities who are early adopters want to be the first to try something new. They are not afraid of risk or to make mistakes. They will test new approaches and identify ways to refine the process as needed, developing best practices to help build upon lessons learned.

Bringing a new, innovative project into the long-term care setting can also provide a competitive advantage by distinguishing a community as one that offers services that other communities do not. Elders, families, and staff will recognize the community’s commitment to trying new concepts and projects to enhance and improve resident care and quality of life.

The drawbacks in being an early adopter can include the emergence of unknown, unexpected costs to make changes and adaptations to test a new, unknown project. There are also risks involved, especially in the potential unknown effects on residents and staff of a new project. Additionally, the implementation of a new, untested project can affect the workload of employees who are likely already over-burdened while being asked to try a new project.

There are also benefits and drawbacks in being a late adopter. By adopting a project or idea late, the existing kinks likely have been worked out, making it easier to implement and potentially less costly to undertake. The benefits for implementing a project may be well known by the time a late adopter brings it to the community which may make the implementation process more worthwhile. Drawbacks to adopting late include the delay in providing elders with the benefits of an innovative program. Further, there may be more costs to elders that might have been avoided if the program had been attempted.

Despite the benefits and challenges in being an early or late adopter, there are some programs which are beneficial to adopt early. The National Partnership to Improve Dementia Care in Nursing Homes (Partnership) works to improve the quality of care for individuals with dementia who live in nursing homes. Part of the Partnership’s mission includes a focus on addressing the amount of antipsychotic medications individuals with dementia are prescribed. According to a memo from the Centers for Medicare & Medicaid Services’ Center for Clinical Standards and Quality/Quality, Safety & Oversight Group , from 2011 to 2018, there has been a national decrease of nearly 40 percent (38.9) in the number of nursing home residents receiving an antipsychotic medicine; however, more work can be done to reduce the use of antipsychotic medications in nursing homes.

As recently as December 2017, there were 1,500 nursing homes identified by the Partnership as late adopters, which are nursing homes with a sustained high or relatively unchanged rate of antipsychotic medication use, or their antipsychotic medication usage continued to be above average without a high percentage of schizophrenic elders in the nursing home.

In order to address these findings, the Centers for Medicaid and Medicare Services (CMS) is providing technical assistance and support to late adopters. There will be enhanced oversight and enforcement actions to support these nursing homes in addressing their high rate of antipsychotic medication use. These strategies will be useful in helping these nursing  homes implement the changes and strategies needed to address the rate of antipsychotic medication use.  The return on that investment of time and personnel to implement programs like those can be significant, in terms of improving elder care, which is always worth attempting, whether early or late.

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers;  kathy.dreyer@ageucate.com