Keywords

Alzheimer's dementia, national initiatives, quality care

 

Authors

  1. McConnell, Stephen PhD
  2. Geiger, Angela MBA

Article Content

As the first and largest voluntary health organization in Alzheimer care, support, and research, the Alzheimer's Association's mission includes (1) elimination of Alzheimer's disease through the advancement of research; (2) the provision and enhancement of care and support for all affected people; and (3) reduction of the risk of dementia through the promotion of brain health.

 

Although working toward stopping and preventing the disease, the association also strives, though its Campaign for Quality Residential Care, to improve the quality of care people with dementia receive when they rely on others to help them live at home or in a residential setting such as assisted living or a nursing home. To date, the campaign has focused on residential care settings, where persons with dementia tend to be most frail and require the most help with their daily activities. In the coming years, the campaign will expand its focus on improving quality care generally, irrespective of setting, including the quality of services people with dementia and their caregivers receive in their own homes from paid staff.

 

The campaign began with 2 important assumptions. The first assumption is that improving care in residential long-term care settings will benefit most people with dementia. This is because two thirds of people with dementia will spend their last days and ultimately die in nursing homes, and because at any point in time, more than half of residents in assisted living and nursing homes have some form of dementia or cognitive impairment, including Alzheimer's disease. The numbers in residential settings will continue to increase because the baby boomers age and prevalence of the disease increase from an estimated 5 million today to as many as 16 million by 2050.

 

The second assumption underlying the campaign is that improving care is best done with all stakeholders at the table. Thus, the association developed a process for including healthcare providers, consumers, long-term care workers, researchers, and payors in all stages of its work. Dementia care experts and professional staff from the Alzheimer's Association, representatives of more than 30 national associations, and other experts were engaged in a consensus-building process to help translate research into specific recommendations with an eye to their relevance and viability in the "real world."

 

Under the auspices of the campaign, the Alzheimer's Association is engaged in improving quality care in a number of ways, including:

 

1. Sponsoring and conducting research on the best methods of delivering high-quality services to people with dementia. This work occurs by providing grants to behavioral and social researchers and sponsoring or conducting research on topics of special concern.

 

2. Developing a series of dementia care practice recommendations, which are evidence-based and form the knowledge base for our training and advocacy programs.

 

3. Helping consumers educate themselves about their long-term care options and which are most appropriate through our consumer empowerment tools, such as the CareFinder(R) and Senior Housing Finder, available online at: http://www.alz.org/caresource.

 

4. Providing professional training, both online and in classroom style, to teach supervisors and direct care staff about how best to care for residents with dementia.

 

5. Advocating with federal and state governmental policymakers for improved dementia care for residents of nursing homes and assisted living residences. Advocacy involves such activities as commenting on federal regulations governing nursing home quality, influencing federal research designed to enhance quality, and passing state legislation governing training requirements for assisted living staff, among other efforts.

 

6. Advocating with direct care providers for improvements in their dementia care by doing such things as speaking at national and regional provider conferences about the dementia care practice recommendations and their accompanying training programs, working with association chapters to promote improved dementia care through their relationships with providers, and participating at the national level in various other campaigns to improve the quality of long-term care.

 

 

Issues 9(1) and 9(2) of Alzheimer's Care Today are complementary pieces, telling the story of the Alzheimer's Association's Campaign for Quality Residential Care. The first issue, 9(1), included the evidence base and phases 1 and 2 of dementia care practice recommendations as well as case studies of providers' experiences in implementing the recommendations in practice. This issue, 9(2), focuses on the evidence base and content of the Alzheimer's Association's phase 3 dementia care practice recommendations, which focus on end-of-life care, followed by articles outlining the practice and advocacy strategies being used to achieve change.

 

Underlying all the practice recommendations, including those designed to improve end-of-life care, is a person-centered approach to dementia care, which involves tailoring care to the abilities and changing needs of each resident.

 

PHASE 3 OVERVIEW: END-OF-LIFE CARE

Highlighted in this issue, the recommended care practices for end-of-life address:

 

* communication and decision-making strategies, including residents and family members;

 

* assessment and care of behavioral and physical symptoms, including pain;

 

* psychosocial and spiritual support of residents and family;

 

* care provision, coordination, and communication when residents choose hospice services;

 

* acknowledgment of resident death and bereavement services; and staff training.

 

 

In particular, there are several specific key aspects of the recommendations that are worth noting in this overview. First, there is a need for advance planning for end of life as soon as possible after diagnosis of dementia. This includes documenting the person's wishes regarding medical treatments in advanced stages of dementia and designation of a proxy decision maker. Second, provision of person-centered palliative care to people with advanced dementia is addressed, recommending that care follow residents' wishes regarding end of life as closely as possible. Finally, the importance of dementia-specific training for residential care workers on end-of-life issues is highlighted, with recommended content including signs of dying, pain management issues, and communicating with families.

 

The recommendations also emphasize the importance of consistency in individualized and person-centered care approaches; development of relationships between staff and residents; and increasing staff knowledge of individual resident's needs, abilities, and preferences.

 

Two primary sources of research evidence were used to develop the phase 3 practice recommendations on end-of-life care and are included in this issue. One is an association-sponsored literature review by Dr Ladislav Volicer, summarizing current peer-reviewed research relevant to end-of-life care for residents with severe dementia. To extend the knowledge gained through this literature review, Dr Jane Tilly, with Abel Fok, wrote an article describing what expert practitioners, providers, professionals, and researchers believe constitutes high-quality end-of-life care for residents with dementia.

 

STRATEGIES TO ACHIEVE CHANGE

In addition to the articles relating to phase 3 practice recommendations, several articles in issue, 9(2), will provide details about many of the campaign activities listed previously, including consumer and provider education, and advocacy efforts to implement campaign recommendations. The article by Bluethmann and Reed outlines the professional training programs created to teach long-term care staff how to implement the practice recommendations. In outlining the development of the Foundations of Dementia Care training program, the methods and results of the development research and pilot testing offer insight into the potential impact of the program in improving the care offered by staff. The next article, by Gould and colleagues, outlines the consumer empowerment strategies by highlighting the development and content of CareFinder. This innovative, online tool offers families and others an understanding of high-quality dementia care and assists in decision making on the basis of their own unique situation. Finally, the article by Splaine demonstrates the successes occurring on the policy front, with an overview of advocacy strategies and issues relevant to improving quality care.

 

FURTHER PERSPECTIVES

The final segment of this issue offers further perspectives on concepts that are central to improving quality: use of person-centered approaches to care and achieving a balance between business and quality goals. By remaining grounded in existing philosophies and care practices while simultaneously considering effective organizational management and business practices, improvements in care do not have to be achieved at the expense of the bottom line. Rather, to move forward as a field, the alignment of quality and business goals will help drive effectiveness, efficiency, and consistency of care.

 

Nationwide initiatives, such as the Alzheimer's Association's Campaign for Quality Residential Care, help push improvements in quality. However, although designed as comprehensive, they are far from fully sufficient. Continued investment in research on new and innovative models of care, continued commitment by all facets of the care sector, and proper training and coordination at every level of staff are required to truly institute and sustain change. As outlined in the campaign overview offered in issue 9(1), there are many different influences on care. Through focused efforts, targeting each of the influences, sustained over time, perhaps together, we can truly enhance the lives of those living with dementia.

 

The Alzheimer's Association is committed to improving quality of care for all people with Alzheimer's disease and related dementias irrespective of the care setting. By engaging the major stakeholders in this process, relying on the best research and evidence-based practices, and focusing on practical care issues with the most impact on the affected population, improvements in care and quality of life are possible. When these recommendations are linked to an assertive advocacy effort, both with industry leaders and public policy makers, the results are even more achievable.