World Alzheimer Report: Private Sector Response

Let’s not wait for the public sector to develop plans to address the dementia crisis. The private sector can and should play a large role.

This expert is from the Alzheimer’s Disease International website referencing the World Alzheimer Report of 2019.

“The report reveals the results of the largest attitudes to dementia survey ever undertaken, with almost 70,000 people across 155 countries and territories completing the survey. It spans four demographic groups: people living with dementia, carers, healthcare practitioners, and the general public.”

Further, the analysis of the study was carried out by the London School of Economics and Political Science (LSE).

Specifically, some of the key findings of the report include:

  • Almost 80% of the general public are concerned about developing dementia at some point, and 1 in 4 people think that there is nothing we can do to prevent dementia
  • 35% of carers across the world said that they had hidden the diagnosis of dementia of a family member
  • Over 50% of carers globally say their health has suffered as a result of their caring responsibilities even while expressing positive sentiments about their role
  • Almost 62% of healthcare providers worldwide think that dementia is part of normal aging
  • 40% of the general public think doctors and nurses ignore people with dementia

Call to Action for Private Sector

In addition, the report lists several calls for action, many of which rest with local, state, and national governments and agencies thereof.  However, the private sector can do a lot to address the disheartening vital findings. People are hurting, suffering, concerned, and uneducated about dementia.

Conversations at my faith community are under-way about how to minister to persons with dementia and their caregivers. Educate citizens about dementia to demystify, normalize, and create an environment of understanding and acceptance.  This is an excellent place to start.

In conclusion, call upon local experts to help start the conversation within your circle of influence and ask questions.  Success will come with each small step.

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.

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.

Wake-up Call: Aging Services Workforce Wage Crisis

We need to examine the value of our long term care system within an ethical framework.

Aging Services providers are screaming from the mountain tops about the workforce crisis– is anyone listening? The workforce crisis is about the inability of aging services providers to fill open positions and the lack of competitive wages, primarily for certified nursing assistants.

How do we square the high level of quality care that most seem to desire for our frail elders with the lack of attention that this issue receives at the national level?

Other industries are also fighting for service workers. This Washington Post article reports that a Chick-fil-A owner in California is planning to pay $18.00 for front line workers. The problem is, nursing assistants in C.A. make, on average, $17.00/hr with the low end at $15.53, according to salary.com. 

The mean hourly wage for a C.N.A. nationally is $14.22, and working in a nursing home or assisted living drops it to $13.73. Given these points, can we, and should we do better than this?

It is simply unrealistic to expect that we can nationally build and maintain an eldercare workforce and not address wages. For this reason, this crisis is worthy of an ethical and philosophical national discussion.

The Value of Excellence in ElderCare

Healthcare reimbursement should reflect the value that our society ascribes to quality eldercare services. To that end, we need a reimbursement methodology that invests in improving wages for front line caregiving.

Chick-fil-A can raise prices to offset higher wages. However, with less than 30% of long-term care consumers paying privately, there is no way for providers to raise pricing enough to offset higher wages. Furthermore, it is not right to balance this problem on the backs of those paying privately. Therefore, with 70% of reimbursements to skilled nursing providers coming from Medicaid/Medicare, the solution largely rests with policy-makers.

We have to seriously discuss the value of quality ElderCare in the United States. Given that a majority of the U.S. Congress being of the baby boom generation, the time is right. With this in mind, the ethical and philosophical questions to examine include:

  • Does our system act in such a way to produce a greater amount of good over harm?
  • Do we maximize utility- the sum of the benefits produced minus the costs (disbenefits)?
  • Do we have a system that we all want for ourselves?
  • Fidelity- have we kept our promise, and are we forsaking the well-being of our elders?
  • Have we assigned an appropriate societal value to the work provided by personal caregivers?

Is this the right place to start?

 

 

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.

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

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