Authors

  1. Splaine, Mike

Article Content

Advocating for effective policies that can shape quality care is not new; the first state law regarding the specific care of persons with dementia was passed in 1949, although most have been enacted in the late 1990s and in the past 3 years. What is new is the publication of true evidence-based, consensus-built practice recommendations-it changes the entire regulatory debate!!

 

Why does the Campaign for Quality Residential Care include advocacy with state and federal governments as a core component? There are several reasons.

 

1. Skilled nursing facility care is a regulated industry, with regulations changing as care patterns and understanding of the persons cared for have evolved over the last 30 years. Skilled care has a large public funding component through Medicaid and Medicare, which defines a public interest in quality.

 

2. Assisted living has become more regulated at the state level in the past 10 years and is not regulated at all at the federal level. Relative to skilled care there are few Medicaid dollars supporting this form of residential care, but that is trending toward a slight increase.

 

3. The sheer numbers of persons with dementia illness in both assisted living and skilled nursing facilities-at least half of residents in both settings-suggest that regulation specific to the population in these residential settings makes good policy sense.

 

4. Improved regulation is in part a response to the demand for a baseline of consumer protection for residents of assisted living and nursing homes who are not able to advocate on their own behalf or may have no immediate family to monitor their care.

 

5. Most important, the new evidence-based, consensus-built practice recommendations are new information for policy-makers to consider because the recommendations represent a consensus about what constitutes optimal dementia care. These recommendations relate to practice but are not specific public policy recommendations.

 

 

PRACTICAL INSIGHTS AS WE MOVED FROM PRACTICE TO POLICY

In translating the dementia care practice recommendations into a workable set of state public policy recommendations, we considered the fact that most persons with Alzheimer's disease or a related disorder in residential settings do not live in a special care unit. So, our advocacy has to touch every resident who may have dementia, not just the small minority (10%) who live in these units. With this in mind we examined all 3 phases of the practice recommendations for new policies that might be promoted. From these 2 considerations, we determined that our best advocacy strategy has multiple components outlined below across several key areas.

 

Dementia training requirements

The association considers dementia training to be the key method of improving dementia care, because trained staff are best equipped to provide person-centered care to residents with dementia.

 

* Training for all staff in dementia care issues and practices. At least 8 hours of preemployment training for all nurses, certified nurse aides (CNA), and direct care staff, and an additional 8 hours of annual continuing education.

 

* At least 4 hours of preemployment training for all other staff (including administrators) and 2 hours of annual continuing education.

 

* A monitoring mechanism to ensure compliance, such as a registry for CNAs.

 

* Portability of completed training among long-term care employment sectors.

 

* A formal certification of training programs by a lead state agency for licensing or its designate.

 

 

Adoption of the Assisted Living Workgroup recommendations

The Assisted Living Workgroup, composed of a wide range of nationally representative provider, worker, consumer, and professional groups, crafted 8 dementia-specific assisted living recommendations, which the Alzheimer's supports because they are consistent with the dementia care practice recommendations. The Assisted Living Workgroup recommendations are as follows:

 

* create a statutory definition of assisted living,

 

* identification of residents with cognitive impairment/dementia,

 

* maintain 24-hour awake staff,

 

* provide security for wandering residents,

 

* institute care planning for people with cognitive impairment/dementia,

 

* disclose information about specialized programs of care for those with dementia,

 

* provide activities for special care residents, and

 

* maintain resident rights and provider responsibilities.

 

 

Special care unit disclosure

Special care unit disclosure is an issue that permeates all industries that have developed Alzheimer's or dementia-specific units. States working on this issue attempt to mandate that residential care facilities fully disclose what, if any, additional services are offered to those admitted to special care units and to ensure that facilities face meaningful penalties for misrepresenting the services that they offer.

 

Levels of care

If a state is considering the creation of levels of care in assisted living, we recommend instead language from a recent New York assisted living statute that creates a framework of individual patient waivers that allow additional services to be brought to support individuals with higher needs for assistance in "aging in place."

 

Enforcement mechanisms and resources

Many states working on enforcement mechanisms for quality dementia care have existing regulations that meet the association's recommendations, but no method of ensuring that facilities or staff targeted by those regulations comply with them. In 2007, the association added funding for enforcement as a component of its public policy recommendations for improving quality. This addresses situations in which states have proper regulations and enforcement mechanisms in place, but the enforcement agency does not have sufficient funding to carry out the enforcement procedures.

 

Key methods of advocating for these public policy changes involve providing specific recommendations to key national organizations of state officials such as Women in Government, the National Conference of State Legislatures, and the Council of State Governments. These organizations, through their educational programs and model legislation dissemination vehicles such as Council of State Governments' Suggested State Legislation publication, provide legislators and regulators real state examples of policy solutions that can serve as a starting point within any one state and national validation that these quality of care policies are important to consider.

 

CONCLUSION

Using the dementia care practice recommendations as the evidence base, we advocate for better state regulation of assisted living, and we advocate with the provider community to adopt excellent dementia care practices. We accomplish this advocacy through widespread dissemination of the practice recommendations to consumer groups, unions, and the providers themselves. We also speak at annual meetings of these groups to get the word out about the recommendations. The association also has training programs available, which show facilities how to implement the recommendations through improved staff training.

 

Together, our public policy and provider advocacy efforts are leading to awareness about how to provide excellent dementia care and a regulatory structure that is friendly to this goal. Our training programs provide the "how to" knowledge for providers, regulators, and consumers. These efforts and our productive relationships with the major national stakeholders in dementia care are promoting excellence in dementia care across the country's assisted living residences and nursing homes.