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By Jackie Pinkowitz, M.Ed.; Board Chair, CCAL-Advancing Person Centered Living

[To support dementia initiativedementia care and learn more about research and practices, register for the International Alzheimer’s Disease Study Tour Today! ]

On Friday, June 29, 2012, The National Dementia Initiative, gathered in Washington DC at LeadingAge for their first meeting to form  recommendations on person-centered non-pharmacologic strategies to address behavioral and emotional aspects of caring for individuals living with dementia in home and community-based settings.

The meeting’s participants included nearly 60 dementia experts spanning research, policy and practice from around the United States. CCAL-Advancing Person-Centered Living is one of the leaders of this initiative.

Like most significant efforts, The National Dementia Initiative “will take a village” to achieve its lofty purpose which began in 2011 with the germ of an idea:  it should gather a leadership team representing research, policy and practice sectors that would:

  • Work diligently to connect dementia experts from all three sectors across the United States and beyond
  •  Who will volunteer their time and expertise
  • To collaborate virtually and in person reframing dementia care  by using a person-centered holistic well-being philosophy and approach
  •  In the context of understanding and responding to “difficult or challenging” behaviors through person-centered non-pharmacologic practices.
Dementia initiative, caregiving

All photos credit of CCAL

In the ensuing months, “sixty villagers” heeded the call and began virtual communications in preparation for our all-day gathering on June 29th, 2012 — a gathering that can only be described as passionate, intense, and singularly focused on our common purpose.  Today, the villagers are back home, enthusiastically volunteering for three  workgroups being formed  to advance this effort.

The aspiration of the recent meeting was to come together on key principles and practices of person-centered dementia care and provide input for a comprehensive White Paper, which will focus on how to support individuals living with dementia.  A workgroup of volunteer participants will be assisting in disseminating and distributing the final paper come September 2012.

To truly understand What Matters Most in our Initiative, you need to gaze upon some of the faces in this blog: faces of those we love, care for, and caringly assist with utmost respect and dignity.

When I opened our all-day gathering, framed photos of “Those who Matter Most” decorated every table and a beautiful kaleidoscope of faces flashed across the screen as I acknowledged:  “Clearly the most important people in our village are not here today—the people living with dementia, their families, and their care partners.  But they are with us in spirit and we honor them through all the wonderful pictures so many of you provided.  I know that if we continue to work together with open hearts and open minds, we will have an incredibly meaningful and productive meeting; and we will succeed in advancing this most important Initiative for these most important people.”

Dementia Initiative

So I urge you, regardless of whatever Change Effort you may be conceiving or currently leading,  to truly understand what drives your amazing villagers (i.e. What Matters Most  to them; what motivates and energizes them to give their all for a greater good) so that you may tap into it throughout your entire fascinating future-focused journey of change…

IAHSA provides an opportunity to join the conversation on What Matters Most and engage in dementia care best practices on October 15-20, 2012 in LA and San Diego, California. IAHSA, in partnership with Alzheimer’s Disease International, will host the International Alzheimer’s Study Tour which will explore the research and treatment protocols for early stage dementia as well as provide a shared learning experience through site visits with communities.

Register today!

On October 15-20 2012, IAHSA and Alzheimer’s Disease International (ADI) will be hosting the Alzheimer’s Disease International Study Tour in Los Angeles and San Diego, California, USA.

ADI and World Health Organization (WHO) came together earlier this year for a publication titled “Dementia: A Public Health Priority”.  The report raises awareness of dementia as a public health priority, to articulate a public health approach and to advocate for action at international and national levels.

According to the report:

  • The number of people living with dementia worldwide is 35.6 million and will double by 2030
  • Worldwide costs of dementia were US$604 billion in 2010
  • Countries must include dementia on their public health agendas
  • Dementia is not a normal part of ageing
  • Priority areas of action that need to be addressed within the policy and plan include:      

                        – Raising awareness

                        – Timely diagnosis

                        – Good quality continuing care and services

                        – Caregiver support

                        – Workforce training

                        – Prevention

                        – Research

These developments are particularly significant for developing countries, especially those in Asia, where populations are aging much more rapidly.

Dementia Statistics

                                                                                [credit: ADI,]

In continuation with the findings of this report, the Alzheimer’s Study Tour will explore research and treatment protocols for early stage dementia and share learning experiences through site visits.  Registration ends August 2, 2012.  Don’t miss this chance to be a part of the international collaboration to address the global crisis.

Dr. Robyn Stone, a leading international authority on aging and long-term care policy, is the Senior Vice President for Research at LeadingAge where she oversees the organization’s Center for Applied Research.   Much of the Center’s work over the past decade has focused on examining the potential for linking affordable senior housing with services to support “aging in place” strategies and more efficient delivery of Medicare and Medicaid-funded services. We sat down with Dr. Stone to discuss IAHSA’s first Affordable Housing with Services Tour upcoming in September 10 – 15, 2012.

You will be hosting IAHSA’s Study Tour in Boston and Vermont – why did you decide on these locations?

Dr. Robyn Stone

Dr. Robyn Stone [Credit: LeadingAge]

The senior housing providers in these states are engaging in particularly innovative efforts to link housing with services.  They are also operating in states—Massachusetts and Vermont—that are experimenting with better ways to coordinate care for the elderly population, have a track record of paying attention to the holistic needs of their aging communities,  and  are very supportive of the role of housing in facilitating successful implementation of these programs.  Tour participants will have the opportunity to gain a better understanding of what it takes to make these programs work at both the operational and policy levels and how they might replicate such programs in their own communities.

Who will benefit the most from this tour?

Senior housing providers–both those serving low and higher income older adults—stand to benefit greatly from this tour.  Service providers who are interested in partnering with senior housing should also take advantage of this tour.  The tour is designed to help housing operators/managers and service providers better understand what is possible in designing programs that will assist low and modest income elders to age successfully in their communities, to remain functionally independent for as long as possible, to avoid expensive and inappropriate ER and hospital visits and to manage their chronic illnesses in their apartments.  This tour will particularly benefit people who are interested in maximizing their resources and developing sustainable partnerships in their communities.

What do you think the international community can gain from this and other tours?

Despite policy and regulatory differences across countries, all countries are attempting to implement aging-in-place strategies for low and modest income older adults that are cost effective and that ensure resident quality of care and quality of life.  This tour provides an opportunity to see innovative programs in action and to share experiences with other colleagues who may provide new insights into how to effectively link housing with services.

There is nothing like seeing operating programs, particularly in the fall, when the leaves are turning beautiful colors in the Northeastern region of the United States!

How can this tour help you in your efforts to deliver better housing and services to the world’s growing elderly population?

This tour will provide important new insights into how affordable senior housing can be an effective platform for integrating services that meet the holistic needs of low and modest income older adults. This includes how to develop more effective and sustainable partnerships at the community level, how to creatively use existing resources and how to attract new sources of financing which are essential to the long-term viability of these programs.

To learn more about the tour, please visit or register here.  You can read more about Dr. Stone’s and the Center’s work at .

Nearly two million lower-income seniors live in independent, federally subsidized rental housing throughout this country. The average age for someone living in affordable senior housing subsidized by the U.S. Department of Housing and Urban Development’s Section 202 program is 79 years old – up from 74 in 2006. More than 80 percent of older adults in the U.S. have at least one chronic condition – and half have two or more. These conditions can lead to severe and immediate disabilities like hip fracture and stroke. They can also trigger progressive ailments that slowly erode the ability of older adults to care for themselves. Chronic illness, along with poor health status and functional limitations, are more prevalent among the lower-income seniors. It would follow then that a large portion of residents in affordable senior housing would suffer from chronic illnesses and disabilities.

In fact, an analysis of data from the American Community Survey found that subsidized senior renters are much more vulnerable than those who own their own homes. According to the data, they are older, twice as likely to experience conditions and limitations that threaten their ability to live independently and three times more likely to live alone. Due to their low-incomes and high levels of disability, these renters are three times more likely to be at risk of needing Medicaid(A public program that assists the poor in paying for their medical care). Independent senior housing communities were never intended to be nursing homes. That said, many of these communities – typically in collaboration with community health providers – have taken steps to address the needs of their residents and provide them with access to basic health and preventative services. Research supports this. Taking relatively simple and inexpensive steps to support residents in adopting healthier lifestyles and getting regular health screenings can dramatically reduce an older adult’s risk of chronic illness, disability and premature death. Conversely, poor management of chronic conditions often leads to frequent emergency room visits and hospital stays and may necessitate the transfer of some older adults to nursing homes prematurely.

A wide range of health and preventative services have been made available to older adults living in subsidized housing communities across the country. Their availability is influenced by several variables, including the characteristics and preferences of residents; resident eligibility  for different programs; the philosophy and commitment of housing managers; the availability and knowledge base of service coordinators; the availability of health services programs and providers in the community; the relationship between the housing property and potential community collaborators; characteristics of the physical plant (e.g., availability of common space, accessibility, etc.); and the resources available to support the work.

There is no one right way of choosing services delivery strategies – no one model that will work for all. There are, however, a number of lessons learned from the experiences of housing and services providers about the value to each of providing health and preventative services in affordable senior housing communities. Affordable senior housing communities can provide a means of delivering a broad range of services to low-income seniors. Building awareness of and disseminating information on new health program opportunities is easier when a large number of older adults live in close proximity to one another rather than being scattered across many locations. This economy of scale can also offer service providers a time and resource advantage. It is convenient for residents, especially those who are frail or have difficulty accessing public transportation, since they do not have to leave to participate in programs or access services.

Interested in learning more about affordable housing with services? Join our study tour to learn more about financing, delivery, and integration of services in the affordable housing setting.

Article by Alisha Sanders, reproduced with permission from the LeadingAge Center for Applied Research.

The Australian Counsel on the Ageing and the Department of Health and Ageing released results on a national listening tour on concerns surrounding aged care. The Minister of Health and Ageing, Mark Butler, participated in over 30 meetings with concerned citizens throughout the country. The conversations yielded some valuable insights, such as the fact that most Australians state that they would like to remain in their homes and receive services at home if possible. People also want a system that is easy to understand and use, and they want payment procedures to be transparent. Interested in the full report? Just click here.

Want to learn more about housing with wrap around services? Consider joining our study tour.

Photo Courtesy of  mugley.

The U.S. 65-and-older population will more than double by 2050 to nearly 90 million, growing at a rate far faster than any other age group. According to Census data, by 2050, one in five Americans will be over the age of 65.  A new report from the Center for Housing Policy, Housing an Aging Population: Are We Prepared?, explores the effects of the coming demographic change on the demand for housing, the challenge of providing meaningful housing choices for older adults of all incomes, and the policies that could help communities across the country respond to the dual challenges of providing older adults with affordable housing and adequate services.

The report finds that older adults are more likely than younger adults to have housing affordability challenges.  As a result, the aging of the population is likely to increase the overall proportion of the country with severe housing cost burdens.  The report also finds that many older adults lack access to affordable services that could help them age in place. The report further covers trends affecting older adults in terms of demand, housing costs, finances, location and housing type, offering recommendations on existing policies that may help to address the coming crisis.

Interested in learning more about affordable housing with services? Consider joining our study tour that will visit communities and providers around the Boston, Massachusetts area.

How do these challenges play out in real life? Check out this video from a Colorado county that is in the process of trying to establish a supported housing project.

The LeadingAge Center for Applied Research was awarded a $698,000 grant from the John D. and Catherine T. MacArthur Foundation to conduct the  an assessment in the United States  that examines whether affordable housing  with services can be instrumental in meeting the health and long-term care needs of low-income seniors.

The grant will help the centre study the role that housing with services can play in helping residents “age in place.” The goal to build the first national dataset on the health and functional characteristics of older people living in public housing with services.

Housing with services is often hailed under the “Berwick triple aim” as a mechanism to improve the care experience, improve outcomes and reduce spending. Interested in setting up a housing with services programme? Consider joining the IAHSA study tour this September.

You can also check out this video from the director of the Center for Applied Research, Dr. Robyn Stone, on the importance of creating an evidence base.

Alzheimer’s Disease International 27th International Conference was one of the most successful ever, as activists and world leaders came together to discuss the science and treatment of Alzheimer’s disease. Check out this video hosted by Daisy Acosta and Marc Wortmann highlighting the event.

Want more information on Alzheimer’s disease treatment? Consider joining our study tour this fall.

The Housing Learning and Improvement Network in the UK has recently released a guide that discusses what  ‘social capital’ in housing with services means for seniors. The guide outlines best practice examples on the use of volunteers, development of neighbor support networks, intergenerational housing relationships and  social enterprise. Based on a wide range of research, practice and responses from UK based housing providers, the authors discuss the challenges and barriers faced by many older people and provide a note of caution about clear assignment of responsibility for personal care and support in housing with services communities. In particular, they ask pertinent questions around:

  • How do volunteers contribute to the running of sheltered and housing with services programmes and the quality of life of those living in them?
  • How do those living in communities, exclusively designed for older people to support each other, contribute and connect to the wider community?
  • What does choice and control mean for people participating in housing with services programmes?
  • How can integrated housing with services programmes foster intergenerational solidarity?

You can see the full chapter here. If you are interested in housing with services, you might consider joining our study tour this September. Also, check out this video on the services that Patching Lodge, in Brighton, U.K. provides to its residents.

Ageing in place is a concept that is frequently discussed, but yet not all organizations are taking steps to make it possible. Losing the ability to drive is a main push factor that causes rural seniors to have to move. There are a variety of ways that this problem can be overcome. Organisations can offer shuttle bus services for seniors;  buses pick seniors up and transport them to grocery stores or day centres. Offering the service to multiple clients can keep prices reasonable for seniors while still being profitable for the organization. Alternately some organisations have organized volunteer driver programs. Using community based volunteers with autos, individuals pick up the senior and drive them to their activity or errand. Organizations charge the elder a small fee for this service to cover the cost of background checks on the driver and coordinating the driving schedule.  Delivering services at home through information and communications technologies is another manner to overcome transportation issues.  Examples of this include physiotherapy delivered through Skype sessions or vital sign monitoring transmitted to a nurse through a telehealth unit. Looking for more great ideas to incorporate into your homecare service? Join us on our Housing with Services tour this fall to see how Peter Sanborn Place, Hebrew Senior Life, and Cathedral Square keep their clients safe, healthy and engaged in the comfort of their own homes.

Photo courtesy of  Johnny Söderbergs nya

About this blog

IAHSA’s Global Ageing Network Blog was created because of you!! We got your message loud and clear – “Provide us with a quick and nimble communications vehicle so we can stay connected and create community across borders".

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Virginia Nuessle, Study Tour Director

Majd Alwan, Director, CAST

Alla Rubinstein, Program Administrator, IAHSA

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