Transparency in Dementia Care With Family Education

Family educational programs that are fun and engaging could help ease frustrations and tensions LTC providers experience with family members.

I read with  interest an article by Martie Moore in McKnights Long Term Care News, “Truth-Telling for True Transparency: Why Does it Matter to your Organization.”

Her research occurred with parents faced with losing a child. Two findings in her study resonate.

Family members are less likely to sue when they understand what is happening to their loved ones.  They are also far more willing to give the care providers grace and forgiveness.  In contrast, families create their own version of what occurred when information is withheld.  Consequently, these opinions are difficult to turn around.

Dementia Out of the Darkness for Families

These research findings led me to think about how much effort Long Term Care providers should put into family education about the effects of dementia.

An article in the Journal of Applied Gerontology cites that family members with loved ones in a nursing home expressed the need for more education and support for involvement within the nursing home setting.

Dementia is perplexing and complicated.   No two people are identical in the way dementia strikes and plays out.  Therefore, being transparent with family members about the myriad of realities living with dementia could prove helpful.

Being accused of neglect with statements like, “my mother has not eaten in three days.”  is troubling.  In addition, how many times have we heard, “someone stole all my mother’s clothes” only to find them shoved under the bed mattress?

Topics for family education

  • The impact of memory loss on day to day living
  • Common behaviors in persons with dementia
  • Helpful communication techniques
  • Can there be Joy with dementia?
  • Well-being and Ill-Being

Consider offering a dementia workshop/R&R afternoon for family members.  To that end, a rotation of educational sessions interspersed with opportunities for a massage, manicure, chocolate, pet therapy, fancy coffee, more chocolate, support, fun, and mutual support could go a long way!

I encourage long term care providers to explore opportunities to educate families about the realities of living with dementia.  In doing so, we might be able to improve relationships and decrease difficulties driven by a lack of understanding.

 

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.

Becoming a Caregiver: Knowing the Tipping Points and Accepting Your Role as a Caregiver

Rosalyn Carter once noted that there are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. Her quote is an accurate assessment of how being a caregiver is a part of our lives, in one way or another. There is a tipping point for becoming a caregiver, and each person can have a different experience with caregiving. Caregiving can be long-term or short-term, depending on the care recipient.

So how do you know you have become a caregiver? Next Avenue published an article on what turns us into caregivers. The article focuses on physical, safety, and behavioral challenges that cause us to take on the caregiving role. Is it important to acknowledge your role as a caregiver? The article also notes that knowing your role as a caregiver can help you understand when more help is needed, such as full-time, professional care.

Knowing and accepting your caregiving role can help you give yourself permission to seek additional help for your care receiver, and more support for you. Accepting that other people can do things for your care receiver that you cannot do, and finding that help, can be liberating. The process for realizing more help is needed can take a while, or it can be something that happens in a moment. A few years ago, one of my relatives needed assistance with bathing. He had no other family or potential caregivers available to provide this care. Even though I was his primary caregiver, I knew that bathing was something I just could not do, and I do not think he would have wanted me to take on that role. Fortunately, he was able to obtain home health and got the care he needed. I was relieved that he accepted that care, and that it was someone else providing it.

While caregiving support can vary, such as taking someone to run errands, assisting with financial tasks, or managing behavioral challenges, all caregivers provide a needed service, and sometimes need more than one caregiver to give all the help needed. Whether you accept your role or not, it is valuable and necessary.
If you still don’t know for sure that you are a caregiver, Jeff Foxworthy has something to add in this video.

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

Joy and Dignity with Alzheimer’s

Create moments of joy for persons with Alzheimer’s and leave them with lasting positive feelings.

When telling people about my work, the response I almost always get is, “I know someone with Alzheimer’s.” A comment that usually follows is, “and it is so awful.”

Yes, having Alzheimer’s is awful. It robs people of their memories, independence, and cognitive functions. Many times, we refer to people with Alzheimer’s as “suffering” with it.

We cannot minimize the suffering, but we also shouldn’t maximize it. Finding moments of joy can help balance “suffering with” and “living with” Alzheimer’s.

Find Joy and Dignity

I participate in a networking group, “Cognitive and Memory Professionals (CAMP).” This group is lead by Dan Kuhn, Vice President of Education with All Trust Home Care in Hinsdale, IL.  The purpose of this group is to discuss current thinking about caring for persons with the many varieties of cognitive impairment.

Recently, we read and then discussed the book, “Dementia Reimagined” by Tia Powell, MD. The tag line for the book is “Building a Life of Joy and Dignity from Beginning to End.”

In my thirty-one years working in long term care, I can recite story after story of the fun and laughter shared with persons with Alzheimer’s.  The reason is this- people with Alzheimer’s forget the facts, but they remember the feelings. By making someone with Alzheimer’s feel good, loved, respected, and dignified is where joy is found.

To illustrate, a colleague at the AGE-u-cate Training Institute likened this to feelings about our kindergarten teacher. While we probably don’t remember specific conversations or interactions, we know if the teacher made us feel good or bad. We will either smile or cringe when we think back depending on the experience.

Friends, by looking through a different lens, perhaps we can discover joy lurking underneath life with Alzheimer’s.

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.

Resolutions for Caregivers: Planning for Self Care

Caregiving Assistance Help Support Caregiver Words 3d Render Illustration

January is typically the time for creating resolutions for the new year. The focus is usually on fitness, making healthy changes and working on a “new you” for the new year. There can be a lot of planning involved, depending on how seriously the resolutions are being taken. With caregiving, there is always a great deal of planning. AARP has a guide on planning. Caregivers also could benefit from planning for self-care, respite, and time for themselves, one of the most challenging and important parts of caregiving.

For caregivers making resolutions for the new year, the planning process can involve resolving what to keep that works well for you as a caregiver and eliminate what does not.

Here are a few suggestions for making resolutions:

Keep people around you who provide support and help you take care of yourself. Take time to continually reach out to that person when you need some support or to vent in a safe space.

Keep remembering that you are doing the best you can with the information you have now. Even if the information and situation changes, you will make the best decisions possible, given the circumstances.

Keep doing the things that bring you peace, whether it is a nap, exercise, or something else that helps you take a break. Accept help where and when you can.

Keep taking care of yourself, in whatever way you can, as much as you can.

Keep taking each day one at a time, handling what is in front of you now.

Get rid of the feeling that you need to do everything for your loved one.

Get rid of any guilt that might come from taking a break. Taking care of yourself will help you take care of your loved one.

Get rid of any feelings that you are not doing enough. You are doing all you can, which is enough.

Depending where you are in your caregiving role, these resolutions may seem feasible or unrealistic. Thinking back to when I was a caregiver for my mom, I’m not sure how many of these resolutions I would have embraced. I can only see the value of these resolutions only after the fact. When you are in the middle of chaos, it’s hard to know where to start or how you can continue. Some days are easier, and some days are harder; it is a daily process. It’s easy to demand more from yourself but be patient with yourself. Manage your expectations for what you can realistically accomplish and what needs more time and effort.

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

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