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

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.

Quality of Life in Nursing Homes—What Matters Most?

Individual preferences determine if one feels they have a high or low quality of life.

Nursing homes often stress that they strive to maximize the quality of life for those elders who reside there. Over the years I’ve heard the term quality of life so many times that it seems rather vague now. Has it become an overused phrase that lacks a meaningful context? What is it anyway and how do we know when we’ve achieved it for anyone other than ourselves?

Quality of life is hard to define, therefore we all have our ideas about it. For one it may be associated with physical function or being pain-free. Yet the next person may stress having regular connections with family or friends. And still a third will say it’s having a clear mind and being able to engage in spiritual practice. The most basic definition I found states says that quality of life is “how good or bad a person’s life is.” I find that sufficiently vague to be meaningless.

So if the quality of life is subjective, then what matters most to individual residents in long-term care? One research article tells us that “The majority of the elderly people evaluate their quality of life positively on the basis of social contacts, dependency, health, material circumstances, and social comparisons.”  Other researchers found that “dignity, spiritual well-being, and food enjoyment remained predictors of overall nursing home satisfaction.”

An especially exciting publication called Quality of Life: The Priorities of Older People with Cognitive Impairment reports that nursing home residents most value:

  • Frequent contact with family
  • Privacy and being able to spend time alone
  • Socializing with others, including staff and visitors
  • Being active
  • Having meaningful activity
  • Engagement in religious or spiritual practices
  • The staff treats them with respect
  • Feeling like staff members see them as individuals

In conclusion, there are many layers of daily existence to take into account when trying to measure if a person’s quality of life is at a high level or is lacking. The bottom line is that we really can’t judge it through our lens; however any attempt to know the person is in the right direction.

If you work in long term care, what’s something you do to help ensure each resident’s quality of life?

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 serves as a Master Trainer and training consultant.

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