Category Archives: Family Caregiver

Validation in Dementia Care: Thank You, Naomi!

Validation helps caregivers step into the world of a person with dementia, creating understanding and empathy.

The most powerful communication tool I’ve learned is Validation. Created by Naomi Feil, Validation is a method of communicating with people with dementia. Stepping into the world of the elder leads to understanding, therefore easing distress.

I’ve distilled the concepts of Validation into two questions.  They help me respond to someone with dementia who is confused and distressed.  First, I ask, “What is this person’s reality at this moment?”  The answer gives me a clue into her world at the moment, and then I can be with her in her world.

Then I ask, “What is she feeling right now?”  I can’t see a motion picture of what’s going on in her mind, but there are clues about how she is feeling. What is her facial expression, body language, or voice intensity telling me?

Now comes the action part.  First, I reflect her reality and then acknowledge the feeling.

Let me illustrate with a story about a woman in a skilled nursing facility where I provided Compassionate Touch® sessions. At around four o’clock, she fretted about getting home to make supper for her family.  Pacing the hall, she asked everyone how to get back home. As time passed, the more anxious and upset she became. The staff was expected to take her to dinner at five o’clock, not an easy task when she was so determined to leave.

What is her reality?  It’s time for her to get home to make supper for her family.  In her mind, her family would be back soon, and she needed to be there for them. Now that I understood where she was at the moment, I could be with her in her world.  What is she feeling? She seemed frustrated and increasingly angry and fearful.

I walked with her, asking simple questions about her family and what they liked to eat for dinner.  I acknowledged her feelings, saying, “it’s so frustrating to be late.” I used humor, “my son thinks he will just starve if I’m five minutes late with a meal!” She nodded and laughed with me.  At one point, I reassured her with touch by gently stroking her back and holding her hand. She became more present in the immediate moment, and she let go of her fixation on getting home.

What created the shift in her was not so much what I said, but rather that she felt seen and heard, therefore, validated. We walked again, but this time to the dining room where she joined her friends for dinner!

How do you feel when someone validates you?

Ann Catlin, OTR, LMT: For twenty years, Ann led in the field of skilled touch in eldercare and hospice. She has nearly forty years’ clinical experience as an occupational and massage therapist. She created Age-u-cate’s Compassionate Touch program and now serves as a Master Trainer and training consultant.

Coping with the Emotional Toll of Moving a Parent to Assisted Living

Family caregivers need support to handle the emotional toll.

My friend Lana is on the emotional roller coaster of moving her mom to assisted living. Coupled with holiday stress, it’s taking quite a toll. Like most seniors, Lana’s mom would rather live in her own home. However, her functioning declined to the point that she fell several times, leading to multiple trips to the emergency room. Lana fretted over the decision to look for another living arrangement for her mom. Fortunately, guidelines helped identify when it was time.

Assisted living may be called for if a senior has difficulty performing tasks of daily life, such as:

  1. Basic personal care tasks, such as bathing, dressing, toileting, eating.
  2. Paying the bill, handling the mail, preparing meals, cleaning, and transportation outside the house.

Furthermore, a worsening medical condition may lead to a lack of activity, falls, incontinence, and poor nutrition, as was the case with Lana’s mom. After yet another hospitalization, it was time; however, the emotional toll has been heavy with grief, doubt, regret, and guilt.

Author Liz O’Donnell offers these strategies to ease the transition.

  1. Give it time. It takes from three to six months to adjust.
  2. Ask friends or family to help.
  3. Expect setbacks. Ups and downs are typical. Allow yourself to feel discomfort with the fact you can’t fix it.
  4. Be a good listener of your parent’s concerns and feelings.
  5. Surround your loved one in familiar belongings from home. Limit new things. The situation is all new.
  6. Advocate for your parent to help build a team. Let them know who your parent is and what her preferences are.
  7. Set boundaries. Decide what you are willing and able to do and stick with it.

Finally, Kathy Dreyer’s recent blog post offers these words of wisdom from her own experience of managing the emotional toll of moving her mom to a facility.  “Let go of what you can. Acceptance can bring relief, whether it is in accepting help or accepting changes.”

What do you believe is essential to help ease the emotional toll of moving a loved one to long term care?

Ann Catlin, OTR, LMT: For twenty years, Ann led in the field of skilled touch in eldercare and hospice. She has nearly forty years’ clinical experience as an occupational and massage therapist. She created Age-u-cate’s Compassionate Touch program and now serves as a Master Trainer and training consultant.

Caregiving during the holidays: Acceptance and support

As Julie Boggess remarked in her recent blog, informal caregivers and the care they provide for care recipients represents a substantial part of the long-term care support system. Caring for a loved one with dementia is challenging and can be difficult. Both stress and burnout in caregiving are all too common, as Pam Brandon’s blog notes. This is especially true during the holiday season. The extra demands that accompany this time of year make getting the regular things done more challenging, and the expectations for getting everything done can be overwhelming.

With the holiday season upon us, how can caregivers reduce stress and the potential for burnout? There are several good resources that provide strategies. AARP offers 10 Tips for Caregivers During the Holidays. These tips provide suggestions for managing holiday activities while being a caregiver. Also, the National Institute on Aging provides hints for making the holidays more enjoyable.

One of the best ways to prepare for the additional stress the holidays bring is to manage expectations. Be prepared to discuss changes with people who may not have seen the family member in several months. It is good to prepare for the potential questions about the care being offered and medical management. Questions and offers of advice may not be helpful, but remember you are doing the best you can with the information you have now.

When my mom was moved into the nursing home, sharing her care was difficult. After working with the certified nursing assistants to help them understand who my mom had been, and what her preferences were, sharing her care was a relief. It was also beneficial to see people caring for my mom who only knew her as she was at that time. Seeing how they worked with her helped me come to terms with who she had become. Sometimes it may take seeing a person through someone else’s eyes to accept where you and the person are. And acceptance can bring relief and peace, which is always beneficial.

Overall, remember to be patient with yourself and the person you are caring for. Do your best to accept what others can offer. Some people have the capacity to give in certain ways, but it may not be in the way that you would prefer. Let go of what you can. Acceptance can bring relief, whether it is in accepting help or accepting changes.

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

Hospital Readmissions: Challenges for the Patient and Caregiver

Hospital readmissions can be costly, in terms of the effect on the patient being readmitted and the related expenses. The American Health Care Association (AHCA) established a Quality Initiative (Initiative) to support the level of care in both the long-term care and post-acute care settings. The Initiative aligns with programs underway by the Centers for Medicare and Medicaid Services (CMS) to address long-term care challenges and costs related to hospital readmissions.

CMS implemented the Hospital Readmissions Reduction Program (HRRP) to reduce payments to hospitals with excessive readmissions as compared to other hospitals. The program, which started in 2010 and began assessing penalties in 2012, reviews hospital readmissions within 30 days of discharge for six conditions: myocardial infarction, chronic obstructive pulmonary disease, heart failure, coronary artery bypass graft surgery, elective primary total hip arthroplasty and/or total knee arthroplasty and pneumonia.

While a person with Alzheimer’s disease or another type of dementia can experience many health conditions, the incidence of pneumonia can be particularly challenging. According to the National Institute on Aging, persons with Alzheimer’s disease can be prone to pneumonia in the later stages of the disease due to potential food aspiration. A person with Alzheimer’s disease is likely to be hospitalized during the disease.

Hospital stays for both the person with dementia and their care partner can be problematic and a source of agitation for several reasons. Moving a person with Alzheimer’s disease or related dementias from a known environment to one that is unknown will likely be disruptive for that person. If the hospitalization is the result of an emergency, both the person with dementia and the care partner will likely be more stressed. Also, transferring into a hospital setting provides several challenges. Typically the person will not know many of the persons providing care in the hospital. These staff members may not have experience, information, or understanding about the unique needs of a person with dementia related to their care. Information about the best ways to accommodate a person with dementia is needed, but even those accommodations may not be feasible. If a care partner or family member is not be available to stay the night with the person, additional challenges can result. The National Institute on Aging has a tip sheet for care partners preparing for potential hospitalizations. Following the NIA guidelines can help care partners plan, yet if the person with dementia or Alzheimer’s disease must be readmitted shortly after discharge, any challenges that occurred previously may occur again.

The Alzheimer’s Association created a policy brief to address reducing potentially preventable hospitalizations for those with Alzheimer’s disease or related dementias. Based on these guidelines, support for the care partner and the patient is needed, both in the home and community setting. The utilization of the strategies, outlined by the Alzheimer’s Association, National Institute on Aging, the Centers for Medicare and Medicaid Services and the American Health Care Association can have a positive impact on the care of those with dementia and their care partners to reduce potential costs and improve health outcomes related to hospital stays and readmissions.

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