Residents with Alzheimer's Receive Inadequate Care in Nursing Homes and Assisted Living

Alzheimer's Association
Monday, 24 November 2003

New Study Suggests Large Numbers In Pain, Depressed

New research indicates that many people with Alzheimer's disease and related dementias are not getting adequate care in nursing homes and assisted living facilities, and may require more care than they are receiving. While similar findings have been reported previously for nursing homes, in this study few differences were noted between assisted living facilities and nursing homes.

"The Alzheimer's Association is committed to doing everything necessary to achieve and ensure high quality care in long-term care settings. These study results have widespread implications for long-term care policy and practice. We will use them to work with leaders in the long-term care field, academics and legislators to develop best practice models and establish guidelines for quality dementia care in assisted living and nursing home settings," said Sheldon Goldberg, president and CEO, Alzheimer's Association.

Among the findings:

• 54.1 percent of residents had low food intake and 51.3 percent of residents had low fluid intake during an observed meal.
• 40 percent of residents with recognized pain received no pain medication, and nearly one-third were not receiving ongoing professional care.
• 24 percent of assisted living residents and 27 percent of nursing home residents were experiencing depression, and of those currently depressed only 28 percent were receiving professional treatment.
• Antidepressant drugs were being used by only 52 percent of the currently depressed residents, and by 34 percent of the currently not depressed residents.

Researchers from the University of North Carolina at Chapel Hill, funded by the Alzheimer's Association, presented results from a multi-state research project, "Dementia Care in Assisted Living and Nursing Homes," in two symposia this weekend at the 56th Annual Scientific Meeting of the Gerontological Society of America in San Diego.

"Our study found that staff pay close attention to assessing and treating those in need, but that care does not typically eliminate all problems," said the study's principal investigator, Sheryl Zimmerman, Ph.D., associate professor of Social Work and co-director, Program on Aging, Disability and Long-Term Care at the University of North Carolina at Chapel Hill. "This holds true for behavioral problems, depression, pain, food and fluid intake, mobility and social inactivity."

"There are now very large populations of people in assisted living and nursing homes who have Alzheimer's disease or a related dementia, and the proportion is increasing. Often these are highly frail people who need significant levels of care and attention. Our research shows that, by and large, this is not happening, which raises grave concerns," Goldberg said.

The Alzheimer's Association plans to respond to these findings by:

• Working with the long-term care industry to create and implement an updated set of guidelines for providers about quality dementia care.
• Developing tools that assist consumers in decision making and educating them about options in their local community so they can make good, informed decisions about care for their loved ones with Alzheimer's disease and related disorders.
• Advocating for better care and appropriate long-term care regulations at the state and federal levels, including adequate training for direct care staff, especially nurse aides.

"As advocates for high quality dementia care, we are determined to improve the way care is delivered by setting the standard of care through guidelines for providers, advocating for stronger enforcement of regulations, and educating and supporting consumers," said Stephen McConnell, senior vice president, Advocacy and Public Policy, Alzheimer's Association.

Details of the study

According to Zimmerman, the number of persons with Alzheimer's disease and related disorders residing in long-term care has increased dramatically and the settings in which they are receiving care have gotten more diverse. In residential care/assisted living settings, available data indicate that 27 to 64 percent of all residents have dementia. In nursing homes, about 50 percent of all residents have a diagnosis of dementia and an additional 20 to 30 percent have other symptoms that indicate cognitive impairment.

"Currently, little is known about the quality of life of long-term care residents with Alzheimer's and related disorders, as well as what treatment constitutes better quality of care," Zimmerman said. "Most of the research that has been done in this area relates to nursing home care and has primarily focused on defining characteristics of the care environment for residents in a particular stage of the disease process."

Dementia Care in Assisted Living and Nursing Homes investigated a representative, stratified sample of 45 residential care/assisted living facilities and nursing homes totaling 423 residents in four states (Florida, Maryland, New Jersey, North Carolina). Substantive findings from the study include:

Nutrition and Hydration — TThis aspect of the study looked at quantity of food and fluid intake, not nutritional content, by observation as well as staff report. The researchers observed a high prevalence of low food intake and low fluid intake among cognitively impaired residents in long-term care settings. This contrasted with much lower reports of eating and drinking difficulties by staff.

• 54.1 percent of residents were observed to have low food intake.
• 51.3 percent of residents were observed to have low fluid intake.

Agitation/Behavioral Symptoms — Researchers found that both assisted living facilities and nursing homes are struggling to manage agitation. Despite high reporting of assessment, treatment and training, agitation is still very common -- between 56 and 66 percent -- in both assisted living and nursing homes. Residents living in facilities with the highest reported supervisor training in management of agitation were less likely to be agitated. The researchers noted that depression seems to be associated with agitation, and recognizing and treating depression might be beneficial to manage agitation.

Pain — In this group of facilities, what the researchers found was:

• In assisted living, supervisors reported that 20 percent of residents were experiencing pain, while 39 percent of the residents themselves reported pain.
• In nursing homes, supervisors noted that 23 percent of residents were experiencing pain, while 25 percent of residents reported pain.
• 40 percent of residents with recognized pain in both settings were receiving no pain medication and nearly one-third were not receiving ongoing professional care.
• Residents in for-profit facilities had higher prevalence of pain, were less likely to undergo professional pain assessment and were less likely to be receiving pain medication.

Depression — In this study, researchers found that 24 percent of assisted living residents and 27 percent of nursing home residents were experiencing depression. Depression in people with dementia in long-term care was associated with more severe dementia, high levels of pain and agitation. For-profit nursing homes had higher rates of depression than nonprofit nursing homes and all assisted living facilities.

Mobility — Researchers found that 51 percent of all long-term care residents in the study had moderate or high mobility limitations. Mobility was related to low fluid consumption and to professional and informal assessments. While residents in nursing homes were more likely to receive professional assessments, a substantial proportion of residents were not assessed or treated for issues related to mobility — even though MDS mandates quarterly assessments of mobility among nursing home residents. Treatment of residents with mobility limitations occurred in 19 percent of those in assisted living and 40 percent of those in nursing homes, suggesting significant room for improvement.

Engagement in Activities — In this study, researchers found that resident activities of daily living dependencies, family social involvement and family involvement in assessment, as well as staff encouragement, are related to more resident involvement in activities. Assisted living residents report enjoying more activities.

For more information, or to contact Alzheimer's Association, see their website at: www.alz.org