Assessing the Quality of Life of People with Dementia: A Marriage of Research, Practice, and Technology

Researchers and practitioners require reliable and valid methods for measuring the quality of life (QOL) of people with dementia to assess the impact of interventions, identify activities that are most engaging and pleasurable, and improve dementia care practice. Practitioners require methods that are both useful and “usable.” mOQOLD (mobile Observing Quality of Life in Dementia) meets the needs of both researchers and practitioners across the spectrum of dementia care settings.

mOQOLD was developed in two stages. First, a three-phase program of research led to the development and testing of OQOLD (Observing QOL in Dementia). The research was supported by staff and funds from Mather LifeWays Institute on Aging and a grant from the Alzheimer’s Association (award number: IIRG-05-13794).

In Phase 1, six existing dementia-specific QOL measures (two resident/client interviews, two staff questionnaires, and two observational procedures) were examined by researchers and service providers in dementia-specific adult day centers, assisted living facilities, and skilled care centers to identify relationships among these measures and the usefulness and practical of each measure. The researchers found that none of the staff nor observational measures were significantly correlated with resident interviews. Although practitioners were most favorable to one of the observational techniques, due to the time required to implement this method, the method was considered impractical for use.

In Phase 2, OQOLD was developed and tested along with five of the previous measures (one observational procedure was dropped). OQOLD observers make systematic assessments of the QOL of people with dementia based on verbal and non-verbal cues as well as indicators of engagement and affect. The coding system used by observers comprises a seven-point scale ranging from +3 (an extremely pleasant experience) to -3 (an extremely unpleasant experience). Definitions and examples are accompanied by illustrated faces that represent the experience. Verbal anchors are also attached to the midpoint and endpoints of the seven-point scale (+3 = excellent, 0 = neutral, -3 = terrible). Below is an example for the highest possible OQOLD score:

 

EXCELLENTAn extremely pleasant experience. A very enjoyable OR high level of verbal or non-verbal engagement with others or an activity.

 

Examples: Having a very enjoyable conversation with another person(s), OR a very enjoyable interaction with a pet, OR a very enjoyable or high level of engagement in talking, singing, or playing games.

 

Unlike Phase 1, where researchers collected most the data, Phase 2 service providers collected all of the data. At the end of this phase, service providers identified OQOLD as the most useful and practical tool for assessing dementia-specific QOL. OQOLD was also the only measure significantly correlated with one of the resident interviews, suggesting that OQOLD taps into the experience of people with dementia, whereas the other measures did not.

Phase 3 research findings documented benefits including:

  1. improving staff knowledge of the impact of their behavior on participants (e.g., observations during lunch time have been used to inform the dietary and nursing staff regarding methods of improving participants’ food consumption), and
  2. motivating a change in care plans by using OQOLD to assess the impact of two different dining settings.)

Additionally, OQOLD has been used as an outcome measure to obtain a grant to assess the impact of a pilot massage therapy intervention, and to provide data to obtain certification. Finally, the QOL of data provides quantitative feedback to family members that complement the qualitative perspective of practitioners.

The second phase of this research was funded by two grants from the National Institute on Aging. Mather LifeWays Institute on Aging and Benten Technologies collaborated over the past three years to improve the usability of OQOLD by developing and testing technological enhancements including data entry via an iPod Touch, wireless transmission of QOL data to a laptop or desktop computer, and intuitive, user-friendly software specifically designed to enable practitioners to produce a variety of reports that can enhance the dementia care practice and the well-being of participants.

The mobile technology maximizes the usability and practicality of OQOLD by providing a device that offers ease of data entry and practice-relevant information. The portable device for recording data, carried by a staff member in his/her pocket with wireless synchronization, minimizes disruption to daily routines of staff and participants. With real-time information collected throughout the day on a mobile device, OQOLD data can be continuously transferred to a laptop or desktop PC for storage, management, and information-generation.

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