Dementia Action Alliance: A voice for persons with early stage dementia in their own words

I recently attended the Dementia Action Alliance (DAA) conference and found it to be the most moving and motivating event that I have attended in years.  While health care professionals are aware that there are over 200,000 individuals living with early stage dementia, our level of understanding of the experience of living with dementia cannot be expressed in words on a page, but only through the voices of those who live day-to-day with early stage dementia. 

As health care professionals, doctors, nurses, social workers, pharmacists, etc., our understanding of Alzheimer’s disease and dementia has been defined by the pictures of the past and our ongoing experience in long-term care.  Years ago, audiences at national and international conferences were presented a picture of dementia through a live panel discussion with a single person who was moderately to severely impaired, their caregiver, and a physician.  The person with dementia would, in some situations, attempt to join the discussion and it was a disturbing experience to have the caregiver and physician speak about them in their presence.  Sadly, that is often still the picture of the disease that as health care professionals we know. But what healthcare professionals need also to see and hear are those living with early stage dementia; how they are thriving and contributing, and how they adjust to life in new and creative ways.

At the time of diagnosis, people living with dementia who spoke at the DAA conference indicated they are offered little information or direction, and essentially no hope. When receiving a diagnosis of dementia, at best the discussion was primarily around getting their affairs in order, that nothing can be done, and that there is no cure.   How does a 48 or 52 year – old person with teenagers and children in college “get their affairs in order?” Where is the help and hope?

We heard was how quickly professionals, and people in general, “write-off” a person who is diagnosed with dementia.  Upon visits to doctors, clinics, or hospitals, any discussion about the disease, treatment or course of therapy is most often discussed with the caregiver, leaving the person with dementia out of the conversation as though they cannot understand or grasp the conversation.  “Talk to me, talk to me,” the folks living with the disease said over and over.  “I am here sitting right in front of you.  Doctor I hear you, I understand you, I am not gone.”  

Everyone at the conference, from presenters, attendees, the vendors and even contractors working the conference, were moved by the stories of those with early stage dementia, in their own words.  The speakers described the impact of the disease on their lives, their work and their families, and how it felt knowing the progressive nature of the disease and what the future would hold for them.  

When given the diagnosis, some of the participants initially admitted believing the only course was to simply give up on life.  However, all of them indicated how grateful they were to have found DAA which has given them life, a purpose, and an ability to make a difference in their own lives as well as the lives of others living with dementia. 

As health care professionals we think we know all there is to know about dementia, but we don’t and I am not sure we can.  To more accurately understand early stage dementia, and dementia in general, is to hear it from those who still have a voice, in their own words.  I urge you to engage with DAA, support their mission and attend their next conference – it will be life changing.

Gilster to be Featured Speaker at North Carolina Culture Change Coalition Symposium

I am thrilled to be the featured speaker for the North Carolina Culture Change Coalition at upcoming symposiums scheduled around the state.

As I discussed in a previous article, the North Carolina Culture Change Coalition understands that leadership is responsible for the organizational culture, which drives quality care, compliance, resident, family and staff satisfaction and staff retention. I will be presenting the following:

  • SERVICE: Model for Leading & Sustaining Culture Change
  • Achieving Culture-Change Excellence through Leadership
  • Impact of Sustainable Culture Change on all LTC Stakeholders

The North Carolina Culture Change Coalition has for decades has been on a mission to improve outcomes for those who live and work in long-term care.  Reportedly the first Coalition in the country, they formed in 1986 and have a large consortium of tireless professionals who contribute countless hours to further this quest.

For more information, the agenda or to register, click HERE.

Excuses, Excuses: Thoughts on Consulting in Long-Term Care

Can I say I have a crush on Gary Tetz, writer of the “Things I Think” column for McKnight’s Long-Term Care News?

As is often the case, bad news for long-term care abounds including new and increasing regulations and oversight, decreasing census and reimbursement, staff shortages, and granny cams.  The list goes on and on, yet at least one person puts the reality of practice into perspective and makes us laugh.  As a consultant with over 30 years of operational experience, including successes, awards and multiple deficiency-free surveys, I had to chuckle at his recent article on consultants, “It’s time for LTC consultants to change.”

Gary is right. As consultants, we do lose sleep thinking and worrying about clients.  We are frustrated by the excuses and the doom and gloom in the industry, and honestly, we refuse to accept justifications for “that’s just the way it is in long-term care.”  Leadership can argue, blame, and make excuses.   In some cases, leadership may believe they know more or better, begging the question of why they hired a consultant in the first place!  Leadership may give up, even quit, but we won’t. 

And though I like Gary’s suggestion, I’m not quite ready to call myself an “insultant” yet, just a consultant who cares, and one who is looking to help people who truly want to improve and be the best of the best.

Focus on Workforce Retention, 2019 Dementia Recommendations: American College of Health Care Administrators Annual Convocation

I am excited to see many of you at the upcoming American College of Health Care Administrators Annual Convocation in Louisville, Kentucky.  I’ll be presenting two sessions this year on workforce, including “Workforce Retention:  The Key to Quality, Compliance and Satisfaction,” as well as “National Dementia Care Practice Recommendations: Developing a Competent Person-Centered Care Workforce.”

We will discuss how staff retention is essential for quality care, regulatory compliance, and how all new regulations and goals are impacted by staff stability including reimbursement, regulatory compliance, customer satisfaction, person-centered dementia care, hospitalization and readmission.  I’ll also present the new workforce recommendations from the Alzheimer’s Association 2018 Dementia Care Practice Recommendations, which are based on a review of current national and international workforce research. 

Despite costs involved in staff turnover, many leaders continue to “throw darts,” using single programs or initiatives, yet a truly stable staff, ongoing regulatory compliance and financial success is found in organizations that have created and implemented a sustainable organizational strategy.  

Click HERE to register or to learn more on scheduling of events for the conference.

Upcoming Program to Examine Leadership Role in Long-Term Care Culture Change

Culture is defined as the thoughts, beliefs, values, practice and social behavior of a particular group of people. Hence to change or enhance a culture requires working with people; changing beliefs, the work experience, affecting actions and behaviors, and making a change in how people go about their daily work. 

Much has been written about culture and culture change in long-term care.  Research has demonstrated organizational success when implementing culture change initiatives, including decreased use of restraints, pressure ulcers, hospitalizations, health-related and quality of life deficiencies.  A change in the culture has been shown to alter staff attitudes about those for whom they care, and increase both their satisfaction and retention.

The North Carolina Culture Change Coalition knows this and for decades has been on a mission to improve outcomes for those who live and work in long-term care.  Reportedly the first Coalition in the country, they formed in 1986 and have a large consortium of tireless professionals who contribute countless hours to further this quest.

The North Carolina Culture Change Coalition believes that organizational culture drives quality care, compliance, resident, family and staff satisfaction and staff retention.  They also recognize that leadership plays a major role and is ultimately responsible for the culture.  The Coalition has organized a number of conferences around the state of North Carolina to discuss, explore and provide mechanisms for implementing change.  I am privileged to be a contributor to this endeavor. 

The programs will be offered in March and April.  Click HERE for information regarding the conference, including dates and locations.  If you are interested in exploring how to make positive change in your organization, we welcome you to attend! 

Keeping Perspective Amid the Changing Long-Term Care News

It is a stressful time and the daily blasts and news for long-term care is reportedly not all that positive.  While staying current and taking in all of the news about the pressures for the industry now and among the regulations and citations to come is important and critical to learn from the experience of others, it is also important keep the updates in perspective.

So, how does one stay grounded and informed, yet balance and enjoy what is to be a special time of year?

Some thoughts for the coming days:

  • Take some time for yourself.  Simply begin your day reflecting on all that you have, if needed list a few things.
  • Understand that you do not know what other people are going through, give them a break.
  • Do what you can for others – it ultimately is a gift to yourself.  But, give what you can and let go of the guilt of not doing more.
  • Stay present to whatever it is that you are doing – be in the moment.
  • Enjoy your family and friends – someone may not be on this earth next year.
  • Take time to focus on the meaning of the season, it is much more than we often take the time to think about.
  • Let go of the negative and focus on the positive. No matter how small it may seem, look for the good in every situation at work and with family.
  • Live in gratitude.

Wishing you and those you love a happy, safe and joyful holiday season.


Thanksgiving: A Time to Offer Appreciation for Long-Term Care Staff

According to the song, “It’s the most wonderful time of the year,” but for some it is not necessarily true of the holiday season.  The holidays present a number of challenges for many – never enough time, multiple food requests, family pressures, scheduling, and of course cleaning, shopping and cooking.

Kicking off the holiday season is Thanksgiving, a time when we anticipate gatherings with family and watching football.  But not everyone is planning to do so, as many of us work in long-term-care and there is no closing for the holiday.

It is always a difficult time for scheduling time off, and not everyone can be off at the same time. Be aware of the staff who do not get the time off that they requested, or who simply chose to work, and make the day special for them. As the leader, if you take the day off, take time to stop by for a while and let them know that you care, are thankful for each one of them, and appreciate the sacrifice.

Think also about the residents you serve and how some may have no close family or friends, and include them as part of your community family.  Make it special for them, too.  Involve them in the holiday celebration, discuss holiday memories with them and make this holiday memorable.

Understand that the time surrounding holidays can be stressful for residents, families and staff and we don’t always know what goes on in their home or within family dynamics.  So, be gentle and understanding that sometimes their behavior is a reflection of the additional stress brought on by the holidays.  We routinely held staff meetings just to remind everyone about the stress of the season and the resulting impact so that we would all be reminded to be supportive and extra kind to one another.

We all strive to provide a beautiful, meaningful and memorable holiday season for ourselves and our families.  Our staff members are no different. They, too, are feeling the stress and pressure to provide these memories for themselves and their own families.

Remember the reason for the holiday is Thanksgiving.  Think of all that you have to be thankful for, all of the blessings in your life.  Write down what you are thankful for, share them with others, and encourage colleagues to do the same.

You take the lead; show how thankful you are for the staff and make this Thanksgiving one to remember, you can help to make it that way—at least at work!

Wishing you, your family and friends a very Happy Thanksgiving.



Dementia Best Practice Recommendations Focus on Person-Centered Care, Regulatory Compliance and Staff Retention

The National Alzheimer’s Association’s updated their best practice recommendations for person-centered dementia care in 2018 and for the first time included workforce (staff) as a separate and important component/area of concentration.

The workforce recommendations, released in the 2018 Dementia Care Practice Recommendations, were created to address person-centered care and mechanisms for the development of a dementia competent workforce.

These research, evidence-based recommendations concentrate on the establishment of systems and processes that offer organizational approaches to person-centered care and at the same time address many of the needs and desires of staff in long-term care.  In essence, recommendations for preparing a competent workforce are indeed a guide to staff satisfaction and retention regardless of the setting.

The recommendations, addressed in the article published in The Gerontologist, include:

Practice Recommendations for Staffing

Provide a thorough orientation and training program for new staff, as well as ongoing training.

A comprehensive orientation should be provided that includes the organization’s vision, mission and values, high performance expectations, and person-centered dementia training.  This training is essential for new staff, and should be included in ongoing education for all staff members.

Develop systems for collecting and disseminating person-centered information.

It is important that all staff know the person living with dementia as an individual.  Establish procedures for collecting person-centered information that includes choices, preferences and life history.   It is also essential that an effective process be developed to share this information with all staff.

Encourage communication, teamwork, and interdepartmental/interdisciplinary collaboration.

An organization should promote staff participation and interdepartmental/ interdisciplinary collaboration through routinely scheduled inservice programs and meetings. Training is most effective when designed to include ongoing education, communication and support.  Offering inservices and conducting meetings on all shifts is important, and will impact attendance, participation and facilitate relationships between staff.

Establish an involved, caring and supportive leadership team.

Creating a person-centered “community” is not possible without service-oriented leaders, managers and supervisors.  It is also vital that the leadership team be vision-driven, open, and flexible.  High performing leaders know that staff are the foundation of success, and when staff are valued, recognized and feel served themselves, they in turn will more likely value and serve others.

Promote and encourage resident, staff and family relationships.

Encouraging relationships among persons living with dementia, staff and families is central to person-centered care, and is fostered in part by implementing consistent staff assignment.  The involvement of all parties in planning care, activities, education and social events may cultivate successful relationships as well.

Evaluate systems and progress routinely for continuous improvement.

It is important that an organization routinely collect and evaluate information on all staff processes, including hiring, orientation, training and satisfaction.  Analysis of the data should be used to evaluate the effectiveness of all systems and identify areas for improvement.  In addition, leaders should share this information with staff, and act upon the results.

The process for implementing these recommendations are organizational in scope, with a need for sustainable programs and systems.  Once implemented in organizations we consult with we have found that these recommendations improve not only the ability to deliver person-centered dementia care (an area of increasing regulatory citations – see my last article) but have also experienced increased resident/family and staff satisfaction, as well as staff retention.

The recommendations have been posted online and were published as a supplement to the February issue of The Gerontologist.




Strategies to Decrease New Hire Turnover in Long-Term Care

In a recent discussion, an Administrator asked about hiring and the rapid turnover often seen in long-term care.  Some suggested it was normal, just part of the business and nothing could be done.  I say not so!

Selecting staff is a process that requires careful attention and a consistent plan.

If you are simply filling staffing holes with “warm bodies,” please understand this will cost you far more down the road. Existing, dedicated staff are tired of working with and mentoring new employees who don’t care—and who loyal staff know will not last. In addition, the financial cost is very high.

Successful staff selection is an intentional, and systematic process.  Many mechanisms exist to eliminate the rapid turnover all too often seen in assisted living and long-term care.  We created a process that decreased new employee turnover.

While there are many components to this system, here are just a few elements briefly described but proven to work when used as part of a process.

  • Encourage applicants to fill out the application in an area that can be observed by someone on your staff, perhaps the receptionist. Train the observer to note the candidate’s actions, behaviors, personality, interactions.
  • Carefully screen and review the application. If the potential employee has been employed by many facilities in the past year or two, it is unlikely they will be staying with you very long.
  • A department director, human resources, or administrator should take the time to at least greet the applicant, introduce themselves and express appreciation for applying.  First impressions are not exclusive to the applicant; the facility should also be warm and welcoming.
  • Whether you interview a prospective employee immediately or schedule an interview at a later date, the interview process is integral to successful staff selection.  The facility interview should follow a consistent and well thought-out system.
  • A consistent list of questions and topics for discussion will ensure all candidates are treated equally. Interview questions will vary for each facility and for each position.
  • We suggest having more than one person interview the candidates.
  • Escort the potential employee on a tour through the entire facility, allowing them to see and experience the various work areas. Potential employee actions during the tour speak volumes about them as a person and their future performance.
  • Continuously evaluate your hiring process, using data to implement and evaluate changes in the process.

In an ideal world, selecting new employees should be a multiple step process.  Ask the applicant to consider the vision, job expectations, and environment. Placing the responsibility on the applicant is another method to validate that the applicant is serious, and that both the applicant and facility are making the right decision.

While turnover does not have a specific line item in most P & L’s, the average turnover in a community housing 100-200 residents can cost in the neighborhood of a million dollars per year!

Of course, you have to want to change and it takes commitment on the part of the organization and leadership team.  Want to change the hiring process and turnover outcomes in your community?  We will gladly show you how and you can share the savings with us!


Staff Turnover, Person-Centered Care and Regulations

Following my recent article on person-centered care (PCC) regulations, a question asked on my thoughts on the challenges of providing PCC considering the staffing challenges facing the industry.

There is no doubt that PCC is much more easily provided when there is a sufficient number of consistent staff.  PCC is at its core relationship based, dependent upon staff getting to “know the person.”  PCC is near impossible when staff turnover is high.  In addition, new regulations regarding staffing is adding fuel to this fire.

Sadly, the industry tends to believe that there is nothing to be done about staff turnover.  And that is NOT true.

What I think I know about reasons given that nothing can be done:

  • Staff turnover is simply part of the business
  • Staff turnover can’t be changed
  • Everyone has high turnover, it is just to be expected
  • Addressing staff turnover will take too much time
  • Solutions to staff turnover are too costly
  • Leaders are not sure how to reduce staff turnover
  • Again and again, nothing can be done

What I know I know that can be done:

  • High levels of staff turnover are too high to achiever PCC
  • Goals and initiatives are near impossible to attain with high turnover
  • Single, individual programs or incentives are like “throwing darts”
  • Staff stability requires an organizational approach
  • Many leaders/administrators want to address turnover, but are unsure how to do so
  • Experienced leaders/consultants are available and can make a difference
  • Money saved far exceeds the money spent
  • You CAN change staff turnover

I know that every facility is perfectly designed for the results it gets.  If you want a different outcome – you have to do something different.

Employee satisfaction is like customer satisfaction.  Customer satisfaction is defined by HBR as, “… the sum – totality of how customers engage with your company, not just a snapshot in time but throughout the entire arc of being a customer.”  Simply replace “customer” with “employee.”

Staff satisfaction and retention is also reliant on the total experience.  Consider how staff are selected, treated, prepared and valued.  Think about how leaders communicated with staff and include them in decisions related to their work.  Are staff cared for and nurtured, and celebrated throughout their employment and by all parties?

Research on what drives employee satisfaction has not changed in several decades.  Employee desires are clear and can be met by improving satisfaction and retention, thus reducing turnover.   However, it takes a plan and sustainable systems.

In this era of increasing regulations and competition, the ability to succeed will be dependent upon knowledgeable and consistent staff like never before.  For many leaders, there is little time for the immense amount of work to develop and implement systems to address the continuous staffing turnover and issues.

We have guided many organizations who have successfully implemented programs and systems, decreasing turnover as much as 50% in one year, with savings calculated as high as a million dollars.  Staff retention is the process of implementing specific systems and processes that change the beliefs and experience of staff, thereby affecting satisfaction and turnover.  It requires commitment and patience, as it does not happen overnight.  However, our experience in doing so indicates that improvements can begin and are evident in less that 3 months.

The decision to invest and tackle staff turnover is what separates the successful organizations from those who continually struggle.

Not sure where to begin?  For those who want a different outcome, we’re here to help.