Dementia: A Way Forward

This is the second part of my two part blog series about dementia. In the first post, I laid out the challenge posed by the growing burden of dementia worldwide and in the United States. In this post, I focus on areas of care and engagement in life as a forward looking response to the public health challenge of dementia. This blog post discusses dementia specific training, caregiving, local supports and services, anti psychotic medicines, care facilities, housing, palliative care, and end of life planning.

Dementia Training for Clinicians

Professional and informal caregivers of those with dementia need specific training. Some institutions are on the forefront of making training and education in dementia care a priority. One of those institutions is Swedish Care International, a branch of the Her Majesty Queen Silvia of Sweden Foundation. The mission of Swedish Care International is to spread knowledge, awareness, and education related to dementia and dementia care globally. The foundation has established several professional training models to accomplish this mission. Swedish Care International offers support to caregivers and families through their platform, DementiaForum.org, and smartphone apps for dementia support and elder care.

Many colleges offer Master’s of Science degrees in gerontology. There is a global need for government support of geriatric education for doctors, nurses, and the entire dementia caregiver community. Physicians may avoid the field because geriatric practice often treats multiple chronic diseases and its goal may not be to cure disease. An additional deterrent is that geriatricians typically earn less than other specialists. In the US, most geriatricians are reimbursed by Medicaid and Medicare, which reimburse at a rate lower than that of private insurance.[ref]Olivero, M. (2015). Doctor Shortage: Who will take care of the elderly? U.S. News and World Report Health.[/ref]Reimbursement adjustments could make the field more appealing. Geriatric and dementia specific training can better the experience of seniors, improve health outcomes, and encourage a more person centered care practice.

Dementia Caregiving 

To find a cure for dementia is of the utmost importance, but meeting the needs of the 47.7 million people who already have dementia and their caregivers should be a global priority. The federally funded National Alzheimer’s Project Act allocated more than one hundred million dollars last year toward finding a cure for dementia and only ten million dollars in funding to supportive caregiver services and education.[ref]Porock, D., Bakk, L., Sullivan, S.S., Love, K., Pinkowitz, J. & Barsness, S. (2015). National priorities for dementia care: perspectives of individuals living with dementia and their care partners. Journal of Gerontological Nurses, 41(8):19-16.[/ref] A study conducted by dementia researcher Davina Porock surveyed people who are living with dementia and caregivers for those living with dementia. Seven hundred participants ranked their desired priorities for dementia funding. “Sure most people in our surveys would love for there to be a cure,” explained Dr. Porock. “But in the meantime, they all have this disease and they need help.”[ref]Porock, D., et al. (2015). National priorities for dementia care: perspectives of individuals living with dementia and their care partners. Journal of Gerontological Nurses,41(8):19-16.[/ref]

Dementia is the number one cause of dependency and disability for the older population.[ref]Integrated Model of Dementia Care. Champlain 2020: Making Choices Matter.[/ref][ref]Dementia A Public Health Priority, World Health Organization, 2012.[/ref] The care needs for a person with dementia are unique and often challenging. Anxiety, paranoia, memory loss, and confusion, along with other chronic conditions that often accompany dementia, place a difficult emotional and physical burden on the caregiver. Care demands increase dramatically as the disease progresses. We have an extreme dearth of caregivers globally because of the high demands of the job and the lack of adequate compensation and support for the caregivers. These factors contribute to the very high turnover rate of those caring for someone with dementia. Because of these factors, those in need of care are often forced to hire unskilled and unregulated help, putting the person with dementia at risk for inadequate care, neglect, or even abuse.

Informal caregivers are unpaid and are often family members, friends, and neighbors. In 2013, informal caregivers in the United States provided 17.7 billion hours of unpaid care for dementia patients.[ref]Alzheimer’s Association, 2014 Alzheimer’s Disease Facts and Figures.[/ref] The Alzheimer’s Association estimates the value of informal care to be 220.2 billion dollars. The annual global costs of informal or unpaid care varies substantially, from 651 billion US dollars for minor help with activities of daily living to 1.057 trillion US dollars for all activities of daily living and supervision.[ref]Alzheimer’s Disease International World Alzheimer’s Report 2015 pg. 62.[/ref] In the US, more than sixty percent of caregivers for dementia patients are women, and twenty one percent of those women are sixty five years or older.[ref]Alzheimer’s Association, 2014 Alzheimer’s Disease Facts and Figures.[/ref] The cost for caring for a woman with Alzheimer’s disease is estimated to be around six times the costs of caring for a man with Alzheimer’s disease.[ref]Yang, Z. & Levey, A. (2015). Gender Differences: A lifetime analysis of the economic burden of Alzheimer’s Disease. Woman’s Health Issues 25(5):436-440.[/ref] The time value of the caregiving that a woman provides when caring for a family member is twenty times more than the caregiving value provided by a male family caregiver. The reason for this discrepancy is that women perform more of the labor themselves when caring for a family member, but when men care for a loved one, they tend to hire staff, which raises the cost of care substantially.[ref]Ibid.[/ref] Caregivers often have to slow their career progression or stop working completely so that they can care for their loved one.

Informal caregivers of those with dementia suffer more physical and mental problems, along with higher rates of premature mortality, than caregivers of those with other diseases.[ref]Chmielewski, E. (2014). Perkins Eastman. Excellence in design: Optimal living space for people with Alzheimer’s disease and related dementias.[/ref] Surveys show that seventy percent of dementia caregivers experience stress, and forty percent suffer from depression.[ref]Huckle, P.L. (1994). Families and dementia. International Journal of Geriatric Psychiatry, 9(9), 735-741.[/ref] Sometimes, caregivers or family members are so stressed, frustrated, and depressed that they resort to elder abuse.[ref]lzheimer’s.org, Alzheimer’s and Dementia Caregiver Center.[/ref]

Healthcare professionals are also challenged when caring for patients with dementia. Evidence shows that caring for patients with cognitive impairment has caused healthcare professionals to experience feelings of depersonalization toward their patients and personal emotional exhaustion and burnout.[ref]Huynh, T., Alderson, M. & Thompson (2008). Emotional labour underlying caring: an evolutionary concept analysis. Journal of Advanced Nursing 64, 195-208.[/ref] A study in the Journal of Clinical Nursing found that healthcare professionals need dementia specific training to build the necessary emotional resilience and skill set required to meet the challenging responsibilities of providing high quality care for dementia patients.[ref]Clissett, P., Porock, D., Harwood, R.H. & Gladman, J. (2013). The responses of healthcare professionals to the admission of people with cognitive impairment to acute hospital settings: an observational and interview study. Journal of Clinical Nursing 23, 1822-1829.[/ref] The study found a need for higher prioritization of person centered care delivery for patients with cognitive impairment within the acute care setting. The study concluded that because person centered care was often not provided, acute care settings have the potential to be harmful to patients with cognitive impairment.[ref]Clissett, P., Porock, D., Harwood, R.H. & Gladman, J. (2013). The challenges of achieving person-centered care in acute hospitals: A qualitative study of people with dementia and their families. Journal of Clinical Nursing, 50, 1495-1503.[/ref] Please see my interview with Davina Porock to learn more about person centered dementia care.

Caregiver support groups can reduce caregiver stress and delay institutional care.[ref]Mittelman, M.S., Roth, D.L., Clay, O.J. & Haley, W.E. (2117). Preserving health of Alzheimer caregivers: Impact of a spouse caregiver intervention. American Journal of Geriatric Psychiatry, 15(9), 780-789.[/ref] Caregiver support can reduce the economic costs of caring for those with dementia.[ref]Foldes, S.S. & Hall Long, K. (2014). The Minnesota economic model of dementia: demonstrating healthcare cost savings with the New York University Caregiver Support Intervention.[/ref] The New York University Caregiver Intervention is a support services program for caregivers of people with dementia living at home or in the community. The program provides support and counseling to help caregivers manage the challenges of their role and connects them to their local support network. The goal of the program is to extend the time a person with dementia can remain at home. The healthcare system of Minnesota adopted the New York University Caregiver Intervention and realized substantial cost savings and impressive quality of life improvement for those living with dementia. Research from the intervention projects that after three years of using the intervention, around five percent more dementia patients will be able to remain at home, and 19.3 percent fewer dementia patients will die in institutions over a fifteen year period. Minnesota has the potential of realizing 1.24 billion dollars in savings through this intervention.[ref]Ibid.[/ref] See this interview by my colleague Sofia Widén to learn more about support services for informal caregivers in Sweden.

Today, there are thirteen million caregivers in the US. That number is expected to quadruple to meet the needs of the growing population with dementia.[ref]Gillespie, L. (2015). Advocate for Alzheimer’s research says aging baby boomers face big threat from disease. Kaiser Health News.[/ref] Caregivers who care for an elderly loved one while also caring for their children are referred to as the sandwich generation. Members of the sandwich generation around the globe suffer the financial, physical, and emotional strain of this dual burden. Clinical care models need to be integrated with caregiver training, support, and feedback. Dementia specific training and support should be given to all healthcare professionals and informal caregivers who care for patients with dementia. We need policymakers to create legislation in support of dementia caregiving education and support services for the caregiver. Legislating better pay for caregivers that includes paid vacation and reimbursement for respite time could draw more people to the field and decrease caregiver turnover.

Local Supports and Services

Enabling seniors to stay safely in their homes as long as possible can lower hospitalization rates, reduce emergency room visits, and delay the need for skilled nursing care. The importance of a person’s local supports and services can not be underestimated when understanding the community of care needed to serve people with dementia. Local supports and services vary with geographic location and can include faith based organizations and churches, senior centers, the local Young Men’s Christian Associations (YMCAs), non for profit organizations, senior transportation providers, mobile or local libraries, caregiver support and education, businesses that offer senior discounts, and meal delivery organizations, among with many others. Lifelong learning is also an important and growing facet of senior care. Organizations that offer classes for seniors in any variety of subjects are crucial. It takes a community of supports and services, along with caregivers, family, friends, volunteers, and a medical support team, to fulfill the care ecosystem needed to address the needs of the growing number of those living with dementia. Please see my case studies of the linkAges time bank and of Full Circle America aging in place and community to read about innovative models keeping older people engaged with their communities.

Dementia Friendly Cities

The United States and other countries are recognizing the need to adapt cities to become more dementia friendly. US Against Alzheimer’s defines a dementia friendly city as, “one that is informed, safe and respectful of individuals with dementia and their families, provides supportive options, and fosters quality of life.” Adjustments that enable transportation, shopping opportunities, community engagement, and lifelong learning are all considered dementia friendly. These adaptions can create new business opportunities while building inclusive environments for those with dementia. The Dementia Friendly America Initiative is a national effort to challenge cities and communities to become dementia friendly. The website offers useful tools and resources. The Alzheimer’s Association and Alzheimer’s Societies around the world are launching similar initiatives in many other countries.

Anti Psychotic Medications in Dementia Care Facilities

Almost all patients with Alzheimer’s will eventually require full time care — either at home or in an assisted living environment. Often, dementia care facilities are overwhelmed by the needs of their residents and resort to the overuse of psychotropic medications. Anti psychotics are known to have potent side effects, and the elderly are more vulnerable to those side effects.[ref]Lindsey, P.L. (2011). Psychotropic medication use among older adults: what all nurses need to know. Journal of Gerontological Nursing, 35(9), 28-38.[/ref] In his long term care quality letter of 1995, Dr. Jerry Howard Gurwitz, researcher and division chief of geriatric medicine at the University of Massachusetts Memorial Medical Center, wrote, “Any symptom in an elderly patient should be considered a drug side effect until proven otherwise.”[ref]Gurwitz, G., Moname, M., Monane, S. & Avorn, J. (1995). Brown University long-term care quality letter. Cited in Journal of the American Pharmacists Assciation: 5(43), S20-S21.[/ref] A study conducted in 2004 found that eighty seven percent of residents in US skilled nursing facilities and acute care geriatric units were taking one psychotropic medication, sixty six percent were taking two, thirty percent were taking three, and eleven percent were taking four or more.[ref]Pitkala, K.H., Laurila J.V., Strandberg, T.E. & Tivilis, R.S. (2004). Behavioral symptoms and the administration of psychotropic drugs to aged patients with dementia in nursing homes in acute geriatric wards. International Psychogeriatrics, 16:61-74.[/ref]

The Ecumen Awakenings project ran from October 2010 through September 2013 in fifteen Ecumen nursing homes. Awakenings used an innovative approach to reduce the use of psychotropic and other unnecessary medications. The project was designed to provide a better quality of life for residents and to improve the quality of care by changing the culture of care. Ecumen designed a patient centered, thoughtful model of care that met the needs of residents with dementia. The project evolved into the Ecumen Awakenings Program, which succeeded in lowering the use of anti psychotic medicines, improving residents’ quality of life, and generating impressive cost savings.

Housing

Housing requirements for a person with dementia can be challenging. Most available housing is cost prohibitive to the average senior. The disease progresses into more severe stages at varying rates, and housing needs change over time. The further along the progression of the disease, the more expensive assisted living housing becomes.

Until the 1950s, people with dementia were sent to mental hospitals. Skilled nursing facilities for dementia patients were the next evolution. In 1986, Congress requested that the Institute of Medicine study the conditions of nursing homes. The Institute of Medicine found that seniors were being neglected and abused and that the care they were receiving was lacking. It was clear to Congress that legislation was needed to protect and support this vulnerable cohort. The Nursing Home Reform Amendments of the Omnibus Budget Reconciliation Act was signed into law by President Regan in 1987. The objective of the law was to ensure quality of care in skilled nursing facilities by requiring a specific list of resident services in any state certified facility, requiring the facilities to follow the Resident’s Bill of Rights, and allowing states to conduct unannounced surveys.

Innovative housing design models are imperative to meet the growing global need for housing for people with dementia. Today, we understand the disease better, and our demand for higher quality dementia specific facilities is driving innovation.

The architecture firm Perkins Eastman designs specialized dementia housing that allows residents to live with dignity in a home like environment rather than in a clinical skilled nursing facilities. Perkins Eastman designs are influenced by information sharing collaborations with geriatricians and dementia specialists, existing alternatives around the world, and a keen eye on the needs of those with dementia and their care teams. The Perkins Eastman vision is of a model for non institutional residents that caters to the existing strengths of the residents. The probable characteristics of the residents, including balance issues, sensitivity to bright light and cold drafts, weakening strength, and hearing and visual impairment, are all considered in the designs.

Perkins Eastman is one example of the innovation needed to house the growing population with dementia. Some others include the Eden Alternative, Abe’s Garden, and Dementia Village. Please read Sofia Widén’s blog post about her visit to Hogewey Dementia Village in the Netherlands.

Because of the growing number of seniors globally, health systems are not sustainable unless we find lower cost solutions for housing. To review some innovations in housing, refer to my summary of the Harvard symposium “Aging and Place: Designing Housing for an Aging Population.” In the past several years, there has been a movement toward aging in place. With the proper monitoring equipment and home modifications, aging in place enables a person with dementia to stay in his home with his spouse for more years. Cost savings and better quality of life make aging in place an indisputably good option. See my interview with Dr. Allan Teel, a thirty year provider of aging in place and community services, and my blog post Healthcare and the Elderly are Staying Home to learn more. Additionally, see Sofia Widén’s, blog post about FocusCura home health monitoring in the Netherlands.

Palliative Care and Late Life Planning

AARP found that nearly ninety six percent of Americans over sixty five wish to age in place and live at home until the end of life. This desire is shared globally. Despite this overwhelming global desire to live at home, many people end up in expensive institutions and receive lengthy, costly, life extending treatments that offer little quality of life. End of life or late life care planning is imperative. The subject is difficult to address. A care plan should be put in place before the age of sixty five to ensure that the plan is created while a person is of clear mind. The option of receiving palliative care at home can be comforting and offer a patient control over her final days. Planning for palliative and hospice care should be a standard practice for primary care providers. For more thoughts on end of life care and planning, see my blog post Atul Gawande and a New Paradigm for Living Well Through the End of Life.

Conclusion

We are drastically in need of new, shared, integrated service models of person centered care and treatment for those living with dementia. These models should be based in coordinated primary care, with a focus on technologically supported care at home. Worldwide incentives need to be put into place to drive innovation in this direction. We must come together in a global call to action to address the pressing issue of dementia and all of its repercussions.