“Frailty is a process of an accumulation of physical, psychological and/or social deficits in functioning which increase the chance of adverse health outcomes (functional disabilities, admission to an institution, death) [1].” In the Netherlands, around 27% of older adults aged 65 and over are frail. This percentage includes older adults living independently (of whom one quarter are frail) and older people living in an institution, e.g. a care home (of whom three-quarters are frail) [1].

Currently, governments in many Western countries including the Netherlands are reforming their healthcare sectors [2] and develop policies that aim to reduce institutional care, thereby encouraging frail older adults to remain community-dwelling [3, 4]. Since these efforts align with the preferences of many older adults [5], these policies may well be successful. However, their success relies on the degree of older adults’ ability to manage their lives, health and healthcare by themselves while community-dwelling [6], where possible assisted by (informal) caregivers. The question is whether frail older adults have sufficient abilities to do so. Older adults often have lower health literacy skills than younger adults [7] and often find it difficult to take an active role in healthcare decision-making [8]. This suggests that the levels of patient activation in older adults may be relatively low.

Patient activation refers to the motivation, knowledge, skills and confidence that equip adults to be actively engaged in their health and healthcare [9]. Hibbard et al. came up with the following conceptual definition of patient activation: “Those who are activated believe patients have important roles to play in self-managing care, collaborating with providers, and maintaining their health. They know how to manage their condition and maintain functioning and prevent health declines; and they have the skills and behavioral repertoire to manage their condition, collaborate with their health providers, maintain their health functioning, and access appropriate and high-quality care [9].” According to Hibbard et al., activation is developmental in nature and involves four increasing levels [9]. Cross-sectional studies among populations with a range of conditions and economic backgrounds reported that adults’ activation levels were positively related to their health status (e.g. health-related quality of life, which refers to the perceived well-being in physical, mental and social domains of life), healthy behaviors (e.g. physical activity, healthy diet), appropriate use of healthcare systems (e.g. not delaying doctor visits) and satisfaction with care services [10, 11]. Females, younger adults and those with higher education and income levels have been shown to have higher activation levels [12, 13]. Longitudinal studies suggest that the level of patient activation is also predictive of future health outcomes [14, 15]. For instance, Hibbard et al. assessed activation levels of adults with chronic conditions [15]. After four years of follow-up, less activated adults had “significant worse levels of medication adherence, getting recommended care, health behaviors, functional health, emergency department use, and hospitalizations” than the most activated adults [15].

Until now, only few studies have investigated patient activation among older adults [16–19]. The studied adults were not necessarily frail and their mean ages varied from 71 [17] to 77 [18]. Investigating patient activation among frail, very old adults is relevant because this population has high needs for healthcare and is more and more expected to manage their lives, health and healthcare by themselves. In this explorative study we determined the degree of patient activation in frail, very old adults. Furthermore, we aim to assess which personal (age, gender, marital status and education) and other characteristics (multimorbidity, type of residency, frailty level, mental competence, physical health, mental health and satisfaction with healthcare) are associated with patient activation in this population.

This study describes a frail, very old population with lower levels of physical functioning than the general older population [27]. A majority of frail older adults in our study had low activation levels (levels 1 and 2 of the PAM). Low activation levels were in particular present among those with a lower health-related quality of life and among care home residents. However, more than half of community dwelling adults had suboptimal activation levels (levels 1 and 2) as well.

Compared to other study populations, such as younger adults with chronic physical disorders (mean PAM scores: 57 [14] - 69 [29] or community-dwelling older adults with lower mean ages (77, mean PAM score: 57 [18] and 74, mean PAM score: 66 [17]), the mean activation score of our participants (mean PAM score: 52) was rather low. This could be related to our participants’ advanced age.

In accordance with previous findings [10, 11], health was positively associated with patient activation in our study. Unlike earlier studies, we found no significant association between age and patient activation [12, 13], which may not be surprising given the homogeneous age of our study population (≥73 years). Unexpectedly, we found higher activation levels among those with low versus high education levels in univariate analyses. This finding could partly be due to a selection effect. In the Netherlands, life expectancy of adults with lower educational levels is 76.6 years for men and 80.2 years for women, while life expectancy for highly educated adults is 82.6 years for men and 86.9 years for women [30]. This boils down to a difference of 6 to 7 years. The mere fact that the low-educated participants in our study, with a median age of 87, were still alive, mentally competent and able and willing to engage in this research indicates that their health situation and everyday functioning was better than that of the majority of their lowly educated peers.

Due to healthcare reforms in the Netherlands, admission policies for residential care homes have become more restrictive. Adults who previously would have been admitted to residential care homes now have to remain community-dwelling, while receiving care at home. This results in an increasing number of community-dwelling frail older adults. For these healthcare reforms to be successful, frail older adults at least partly need to manage their lives, health and healthcare by themselves [6]. However, the low levels of patient activation as found in our study indicate that the majority of frail older adults may not have the abilities, knowledge, skills and confidence to adequately engage to this level of self-management. This may have several consequences for their health and healthcare.

First of all, many older adults have multiple chronic conditions, often associated with disabilities, poor functional status and poor quality of life [31]. Their health and healthcare is further compromised if they also have low activation levels, as shown by Hibbard et al. [15].

A second possible consequence of older adults’ limited self-management skills is a higher number of hospital (re-)admissions and an increasing use of complex emergency care. As shown by Hibbard et al., less activated adults had higher rates of hospitalisations and emergency department visits than higher activated adults [10]. An increasing use of complex emergency care has been already observed in the Netherlands [32]. According to employees of emergency departments and ambulance control rooms of two Dutch provinces, this is due to higher numbers of community dwelling frail older adults as a consequence of recent policy chances that aim to reduce institutional care [32]. Also, general practitioners from all over the country and the primary care branch association have reported to experience greater work burden due to more urgent care demands outside office hours from frail older adults, who now remain community-dwelling [33].

Third, limited self-management skills of older adults may result in a higher than expected need of (informal) caregiver assistance. Recent studies already demonstrated an increasing need for informal caregiver assistance [34]. This has been associated with high levels of caregiver burden and several health-related problems, such as sleep-disturbances and depressive symptoms [35, 36].

Previous studies have shown that patient activation can be improved by e.g. clinical-based or community-based interventions, which allow adults to be supported in the development of their self-management skills [10, 11]. However, as these studies were performed in young and middle-aged adults [10, 11], it is unknown whether patient activation is still modifiable in frail, older adults. It has been argued that efforts to promote patient activation are ethically justified because of two reasons. First, the right to self-determination of adults will be addressed by allowing them to set health goals and by promoting their ability to accomplish these goals [37]. The second justification is a consequentialist one: evidence shows that efforts to promote patient activation are likely to produce better health and health care outcomes [37]. However, expecting adults to actively promote their own health and healthcare is only justified when they have the capacity to do so and when others create a realistic opportunity for them to do so [37], e.g. by delivering healthcare tailored to their care needs and activation levels.

This study has several strengths. We conducted personal interviews assuring that participants understood the questions correctly and that we interpreted their answers appropriately. Furthermore, we were able to include study participants with the exceptionally high median age of 87 years. There are some limitations, which should be considered when interpreting the findings. The response rate of our study was modest. Therefore, our findings are not necessarily generalisable to all frail, older adults who receive care. Furthermore, our study population consisted of mentally competent older adults who were able and willing to engage in research and who were potentially more interested in conversations about health and healthcare than decliners. This may have resulted in an overestimation of the level of patient activation in this population. On the other hand, the TFI may be more likely to identify people who have lower levels of activation. Finally, this study had a cross-sectional design. We were not able to draw conclusions concerning the direction of associations between health characteristics and patient activation.

The majority of this frail and very old study-population, especially those with a lower health-related quality of life, may be unable to manage their health and healthcare to the level expected of them. The increasing population of frail older adults may need help in managing their health and healthcare.