Warning: This letter might have a bit of a "soap box" undertone as my passion has been really fired up about this topic. But I will try to balance my emotions with facts.
So much information about the growing prevalence and problems associated with Alzheimer's and related dementias (ADRD) has been in the news. The recent writings and statements have had a sense of urgency to find solutions to this growing concern. Solutions exist in the form of non-pharmacologic interventions that have been shown to minimize dementia-related problems. However, solutions can not be implemented without proper training.
We Face a Problem of Epidemic Proportions Which Has Led to Calls for Increases in Dementia Training
Our government has recently acknowledged that we are facing an epidemic of Alzheimer's disease and related dementias. This acknowledgement was made by the Council of State Governments. See the excerpt below from the statement made on the Alzheimer's Association website in December 2008.
The Alzheimer's Association applauds the Council of State Governments (CSG) in its effort to inform state legislators about cognitive impairment and the emerging Alzheimer epidemic. For 75 years, CSG has helped leaders in all branches of state government by providing information on emerging and evolving trends, their implications for state governments and potential policy solutions.
Experts agree our nation must act now to confront Alzheimer's, and CSG has provided state legislators with a broad array of policy instruments to begin this action. CSG recommendations for state legislators include creating and implementing Alzheimer state action plans and supporting proposals to institute or expand dementia training for all paid direct and indirect care staff in all care settings.
Also in January 2009 the National Alzheimer's Association put out a position statement on their website with regard to the urgency of acknowledging the huge number of people currently with ADRD and the need for increased education for health care professionals. See an excerpt from the position statement below.
Association statement on strengthening the long-term care workforce
As the leading research and advocacy organization for Alzheimer's Disease, the Alzheimer's Association applauds Sens. Herb Kohl (D-Wis.), Blanche Lincoln (D-Ark.), Bob Casey (D-Pa.) and Rep. Jan Schakowsky (D-Ill.) for their commitment to improving the quality of care for individuals residing in long-term care facilities addressed in the Retooling the Health Care Workforce for an Aging America Act legislation.
With an aging baby boomer population and an escalating Alzheimer crisis, it will be more imperative than ever that better training and education be provided for the myriad of individuals who care for them. From licensed health professionals to direct-care workers to family caregivers, all will need enhanced training and education to meet the unique needs of people living with dementia.
Recent studies have shown that there are many benefits to non-pharmacologic interventions that are delivered by trained health care professionals. For example a study conducted by Dr. Laura Gitlin and colleagues concluded (for more information review the research updates this month):
"……tailoring activities to the capabilities of dementia patients and training families in activity use resulted in clinically relevant benefits for patients and caregivers. Treatment minimized trigger behaviors for nursing home placement and reduced objective caregiver burden. Noteworthy is that depressed caregivers effectively engaged in and benefited from the intervention."
Therefore, we must fight harder to gain and distribute our knowledge wealth to our therapy teams and other health care partners. If health care professionals serving those with ADRD do not have proper skills to evaluate, treat, and train others, people with ADRD and their caregivers will suffer immensely.
When the Going Gets Tough the Tough Must Get Going
We must all dig deep inside to find the strength to advocate for quality of life for those with ADRD. We must make our case for all therapy staff and other professionals to receive the dementia training they need to be able to assess and treat those with mild to severe dementia.
We must use the training we have to make real changes to the quality of life, functional performance, safety, and health of those we serve. When we facilitate successes, we must share the results with others through informal conversations, care plan meetings, published articles, and research.
We must take every opportunity we have to educate families and direct caregivers. This can be through skilled service as a part of the maintenance program training. It can be a part of staff inservices and family speaking engagements.
We must encourage leadership to understand the many benefits of sending their staff through dementia training that is "abilities-focused" and has a congruent frame of reference between all disciplines. Training benefits can include better QI results (i.e. less weight loss, falls, and depression), better resident, staff, family, and surveyor satisfaction, and increases in revenue through therapy utilization and census.
Dementia education must not take a back seat during difficult economic times or any other time. The number of people living with ADRD in the settings in which we work is staggering. The impact their dementia has on their health status, safety, and the therapy, nursing, and activity plans is overwhelming. We can not ignore these individuals or pass them up during screenings or other patient identification activities. We can not let these people exist in a world of loneliness and helplessness.
We Are at a Crossroad—Which Path Will We Take?
Medicare budgets may be tightening, yet the number of beneficiaries with ADRD is growing which means the number of people with ADRD nurses, therapists, and other professionals come in contact with every day is also growing. How will we address this challenge?
I believe one day, if we continue to collect data that demonstrates the effectiveness of dementia care that promotes best abilities, we will see amazing rewards. While the fight to find a cure for ADRD continues to wage, the only real hope for people with ADRD now is the specially trained therapist, nurse, CNA, activity professional, and social worker.
Through the best-abilities care approach delivered by competent and loving professionals we may be able to slow the progression of the disease, ease the burden on caregivers, reduce dementia-related behaviors and the overuse of psychotropic meds, increase overall health and well-being, and save Medicare money.
Without a proactive, best-abilities approach delivered by competent professionals, the huge number of people with ADRD will simply wait to die while existing with many disabling co-morbid conditions such as activity dependence, mood and behavior issues, poor nutrition, weakness and falls, and depression. We must get out of our "same-old, same-old" mentalities. The population in our nursing homes, assisted living, and home care is different than it used to be. The dementia prevalence is much higher and we must respond accordingly with staff dementia training and specialized programs.
The choice is ours. Will we do everything in our power to provide and advocate for dementia training for therapists, other health care professionals, and families or will we take a path of least resistance?
If you are reading this, you are a leader. You are an advocate. I implore you to fight for the right to quality of life for all those with ADRD! Leading a quality life in spite of having ADRD can only happen if caring professionals are empowered with knowledge.