Mapping the experience of an individual with dementia

Imagine walking in the shoes of someone struggling with dementia. Then, while observing their daily challenges, devising a map that captures what life is like for them on a typical day—using their perspective—centered on what they need and then turning that map into a plan for that patient’s personalized care.

The University at Buffalo Institute for Person-Centered Care will be doing just that as a result of recent training and certification in advanced dementia care mapping (DCM). This certification will allow institute researchers to map and provide written as well as in-person feedback to various organizations locally and throughout the U.S. who wish to improve the dementia care and services within their facilities.

“DCM takes a person-centered view of care, which means that the task of care is seen as being much more than meeting basic physical needs; it is about the whole person, of empowering each individual to make full use of their abilities and remain a social being.  It is not designed to be critical of staff or monitor care,” says Davina C. Porock, PhD, associate dean for research and scholarship in the UB School of Nursing and director of the Institute for Person-Centered Care.

“When observing from the perspective of the individual, the mapper ‘sees’ the issues differently and can evaluate the individual’s quality of life,” she says.

DCM is the formal name of an observational tool designed by Bradford University in 1989 in the UK to examine quality of life from the perspective of the person with dementia. It is a tool for evaluating and improving the care given to people with dementia in formal settings such as day centers, residential homes, nursing homes and hospital wards.

The idea of DCM appeals to Porock because, as director of the institute, she specializes in person-centered care, specifically care at the end of life.

According to Porock, people with dementia often conjure up for us images of individuals who are forgetful, confused and possibly lost or wandering or behaving in unpredictable ways. We think in terms of the challenges they present to us—as health care workers and family members—but we don’t often think of them in terms of their own personal and social needs.

“Person-centered care, at its most fundamental, is about ensuring dignity, personhood, and purpose for vulnerable and frail individuals no matter where they live,” said Porock. “Its aim is to alleviate the boredom, loneliness and helplessness these people often feel.”

Rhonda Rotterman, RN, program director for the institute and certified in advanced mapping says that when using DCM, the mapper is looking for four things:

• the range of activities in which a person is engaging;
• the relative level of well-being of the person;
• episodes of best practice care provided by the care team;
• episodes of care provision that could be improved.

She says that during an evaluation, which may take several hours, recordings are made every five minutes. After analysis, the observations are fed back to the health care teams, and used to improve care.

“It is through these observations that you begin to realize how small deeds and words have a profound impact on people,” says Rotterman.

At the completion of the mapping process, mappers will analyze the data, produce a written report and conduct a live feedback session with the organization that includes the group that was evaluated as well as individual insights. This information can then be used to create training pathways to improve care and services.

Porock adds that the value of tools to better understand and treat people with dementia goes far beyond individuals or health care facilities in which they reside.

“According to the Rand Corporation, the cost of dementia care is expected to double by the year 2040. And, worker stress is higher in facilities with specialized dementia units. When staff are ill-equipped to care for these individuals, they experience higher levels of stress and burn out leading to high rates of turnover,” she says.

For more information on DCM, person-centered care workshops and continuing education unit opportunities (CEUs), go to the UB Institute for Person-Centered Care web site at http://www.ubipcc.com/index.html or email the institute at info@ubipcc.com