Annals of Long Term Care

The quality-of-life model that we subscribe to recognizes that having opportunities to choose, especially from among meaningful options, can significantly influence a person’s sense of well-being.^1,2 Correspondingly, cultural and regulatory changes in recent years have sought to make nursing home life more akin to the life residents enjoyed while living independently in the community.^3,4 Attention to relationships, resident preferences, and lifestyle patterns now often predominate over safety, management, and treatment issues.⁵ This shift in the philosophy of care for nursing home residents is commonly referred to as culture change. To individualize the nursing home experience for residents—an important pathway to a better quality of life—it is crucial to offer meaningful activities that reflect their preferences^6-8 and to encourage them to explore and choose from among those options.⁹ Many individuals transitioning to long-term care (LTC), however, experience a narrowing of choices for meaningful activities,¹⁰ especially in facilities where care staff lack information about residents’ preferences.^11,12

A study of 135 LTC residents found that they were generally dissatisfied with the level of control they had over important choices in daily routines, in their ability to make purchases or use the telphone, and in excursions.¹³ To assess the quality of nursing home care, a national panel of nine experts identified quality indicators from focus groups, interviews with residents and families, and a literature review, and they rated these indicators using a modified-Delphi panel process.¹⁴ Inadequate choice and lack of control over daily activities were consistently noted as concerns. Instituting preferred daily life activities was among the recommended indicators rated as feasible to implement and measurable by direct observations of care, with participation in specific activities identified as a potential indicator as to whether preferences have been met. A grounded analysis of focus groups for caregivers and dementia subjects in eight countries reported that “choices” was the most common suggestion for improving quality of life.¹⁵ Thus, residents’ quality of life can be improved if care staff are able to discern residents’ preferences and offer them a selection of personally meaningful activities.

Currently, residents’ choices with regard to mealtimes receive the most attention.^16,17 Reimer and Keller¹⁶ identified choices regarding food service as one of three areas residents considered meaningful,leading to a recommendation that direct care workers be trained to improve person-centered mealtime care. Expanding the range of syntonic choices well beyond activities and meals, even as far as end-of-life directives,¹⁸ can preserve residents’ sense of autonomy and preserve quality of life. A sense of autonomy promotes health and well-being at all ages,¹⁹ and residents can and will benefit from feeling their input can change their surroundings in a meaningful way.²⁰

One way to identify residents’ activity preferences might be to take a systematic narrative history of activities that the resident enjoyed prior to admission. Gathering information about residents’ desired activities can facilitate the ideal goal of recreating those opportunities or a reasonable goal of devising comparable options. The attainment of either goal represents successful re-engagement in prior activity preferences (PAPs). In this article, we discuss our approach, which involved (1) directly interviewing residents about their PAPs and available choices; (2) identifying health-related or contextual obstacles to engaging in PAPs; and (3) working with residents and staff to develop novel interventions to re-engage residents in PAPs.

The Interview Questionnaire

To assess residents’ PAPs and identify obstacles preventing them from engaging in desired activities, we developed a structured interview questionnaire (Table [click thumbnail for full view]). The questionnaire, which is divided into four sections and takes approximately 30 minutes to administer, incorporates validated items from the CLIN-CARE assessment^12,13 and original items generated by our team. The objectives are to identify residents’ interests, the ways in which health impedes their activities, and any resident-specific goals or desires.

The first portion of the interview addresses nine categories of health-related obstacles—health in general, memory, energy, pain, mobility, fear of falling, hearing, sight, and shortness of breath—as they relate to a resident’s ability to “do the things he/she wants to do.” One point was assessed for each positive response, with the total points indicating the “restriction score” (ie, a “yes” response to five of the nine restriction questions produces a score of 5/9).

The second section seeks to identify activities with personal significance to the resident before and after institutionalization. Residents are asked about activities they “enjoyed the most” in recent weeks, those they enjoyed the most shortly before becoming an LTC resident, and those they enjoyed the most 5 to 10 years before entering the nursing home.

In the third part of the interview, residents are asked about a comprehensive range of activities, to help them identify activities previously enjoyed in which they are no longer able to participate. Activity categories included are games, reading, arts and crafts, gardening, culinary arts, religious activities, cultural activities, new technology, communications, shopping, music, pets, exercise, television/movies, sports, travel/excursions, driving, socializing, dancing, photography, volunteering, and classes.

The final section attempts to elicit goals or activities the patient finds meaningful, using an open-ended prompt: “If your health was not an issue, is there anything special that you would want to do in the next 6 months?”

In March 2009, our team approached residents of our 125-bed skilled LTC facility in the Bronx, NY, who were identified by nursing home staff as cognitively intact and able to indicate their preferred activities. We administered the questionnaire to 11 residents (age range, 57-95 years) who expressed interest and provided informed consent; five respondents were men. Each interview took 25 to 45 minutes. In every case, the interviewer was able to identify one or more PAPs and direct obstacles that hindered the resident’s ability to engage in PAPs. The obstacles most frequently cited were lack of energy, limited mobility, pain, memory or health problems, worry about falling or injury, lack of materials, and lack of opportunity.