Frailty from the perception of the frail older person

This category addresses how older adults perceive frailty. The older adults’ view of frailty is recurrent as a negative, harmful, rejected and associated label, with worsening health conditions, reduced participation and increased stigmatization^11,15,25,32. A qualitative study on the perception and attitude of older adults towards frailty identified a discrepancy between operationalization in clinical contexts and the understanding of older adults¹¹. Older adults did not identify themselves as frail even when they met the objective diagnostic criteria, and this classification did not always coincide with a feeling of frailty¹¹. For older adults, frailty was identified based on health levels and participation in physical and social activities, resulting from isolated events, temporary disabilities, old age and physical limitations¹¹.

Frailty was described as a negative physical and psychological condition, close to disability, and reflective of common stereotypes of old age¹¹. For many older adults, frailty was inevitable, permanent and irreversible due to aging, and composed not only of physical elements proposed in the phenotypic definition, but also mental and psychological aspects²⁵. Thus, for older adults, changes in health could be the cause or result of self-identification as frail, so that the diagnosis was not only information, but also a determinant for their health¹¹. The most frail participants accepted the diagnosis more easily, as they lived with more symptoms than less frail individuals²⁵. Even among frail older adults, there is a preference not to use the term to describe their health condition, so programs should innovate to find a form of communication that is acceptable²⁵ and pay attention to the negative effects of the label of frail for this population¹⁵.

It was also found in literature^4,5,15 that the malleability of frailty is little known among older adults, requiring health education to raise awareness of the reversibility of frailty and modify health behaviors. Older adults, who live in deprived neighborhoods, seemed to be resourceful when dealing with adversities, and were happy with their abilities. This behavior, for the authors, could mask deficits in knowledge, revealing the potential of health education to tackle the difficulties related to aging⁴.

Another study addresses the understanding of frailty by older adults as a dynamic state that combines factors of balance within the scope of the individual, the environment and macrosocial factors, which influence the maintenance of a good quality of life¹⁰. Therefore, control in the area of health is multidimensional, and external factors are just as important as the active attitudes and cognitive processes used by the subjects themselves¹⁴. In contrast, there are also reports that being frail can facilitate obtaining assistance, care, support and benefits from others, and may function as a means to seeking improvements in care and services¹¹.

Priorities from the perception of older adults

Identifying evidence of the priorities perceived by older adults is important²⁸. This category shows the interest of frail older adults in remaining at home²⁸ and as independent as possible, with autonomy, quality of life and the ability to deal with daily activities^23,28. From the perspective of older adults, declining physical health is revealed as an accepted aspect of the aging process^28,40, with the condition of remaining independent and not disturbing others²⁸. Preserving their capacity for self-care, remaining active social networks, not feeling lonely, manifesting fewer symptoms, as well as maintaining their autonomy, participation in the community and accessing essential services, are listed as priorities^4,10,28.

Even the most frail older adults display engagement in daily activities as a subsidy for building resilience against frailty³². The perspective of frail older adults also demonstrates the experience of anxiety, insecurity, uncertainty and fear regarding frailty, when daily life becomes precarious and challenging^18,38. Thus, the sense of control is reduced, and individuals seek support to adapt to their new levels of frailty¹⁸, to maintain their independence and the continuance of their personality³⁸.

Studies have shown that many frail older adults are reluctant to ask for help or support from their social network for fear of disturbing others or concluding that receiving help is impossible²⁸. After experiencing an acute illness, the desire remains to remain independent, to ‘return to normal’ and, if necessary, to find one’s new normal according to preferences in one’s own social context²².

From this perspective, priorities from the perspective of the frail older person are not only medical problems, but also include factors that support the maintenance of the ability to take care of oneself^4,38. Through a logistic regression, in the bivariate analysis, frail older adults who were satisfied with their ability to take care of themselves were about eight times more likely to rate their health as good than those who were not satisfied with their ability to care for themselves⁴.

Among the factors that modulate the perception of control of health care among older adults, the following stand out: self-confidence in the organization of professional and/or informal care and in health management in the home environment; the clarity of the care available; as well as the perceived support of the individual’s social network, health professionals, health organizations, infrastructure and services¹⁴. In contrast, a lack of interest in self-care can be a consequence of the loss of skills, causing expectations to be lowered in this area¹⁴. The perception of impaired independence is associated with the clarification of its different dimensions: relative, special and social⁴².

Perspectives of older adults regarding care services

From the perspectives of frail older adults living in the community, important points can be made about the care provided by health services, indicating the need for more heterogeneous responses¹⁸. The articles reviewed highlight the focus on the independence of the frail older person, person-centered care and personalized assistance on topics important to the daily life of each individual to maintain their autonomy, despite their disabilities^15,18,24,38. The integration of services to minimize fragmentation in the provision of services, improve communication, socialization and mobility are necessary^15,18,24,34. Emotional aspects to produce comfort and well-being; the adoption of psychosocial and spiritual approaches; and the assessment of care needs and comprehensive geriatric assessments are also essential³⁴.

The multidimensional concept of frailty requires that the subjective perspectives of older adults be considered. One article highlights the salutogenic approach in care planning as beneficial to frail older adults, based on the narratives of this population group about their daily life, in order to support the individual in their living context, allowing them to remain in their social network and to maintain satisfaction with their ability to manage everyday life⁴.

Frail older adults need a wide range of services over a long period of time due to the complex health situation and changes they experience³⁶. In Poland, the perspective of frail older adults revealed the inadequacy of services for the needs of this population. Among the difficulties encountered when accessing health and social care were: the lack of knowledge about the existence of some services; shortages in the provision of care, lengthy waiting times and the geographical location of the services; the lack of an adequate and trained professional in the area of older adult health, the low operational level for the most vulnerable people, among others³⁶.

The screening of frail older patients by health services must be accompanied by support interventions for older adults and their caregivers¹⁵. In primary care, studies have shown the need to invest in the interaction between patients and professionals to improve the quality of care²⁷. In this context, the perception of the demand for care provides important information about the real care needs of frail older adults - however, more attention is often paid to physical and environmental issues than those in the psychosocial domain⁶. In the United Kingdom, older people evaluated the care received positively, affirmed their confidence in and the continuity of health care to avoid unplanned hospitalization by including medication, physical aids, adaptations to the home, the adoption of a healthy lifestyle and psychosocial practices³⁵.

Scientific evidence suggests that interventions should focus on the multidimensional perspectives of frail older adults discharged from hospital, be cautious during transition care and reorganize the integration between the primary and secondary care sectors²⁹. The involvement of the frail older person in their care, in decision making, in the transition of care from the hospital to the home requires improving communication and information²⁹. For patients, the type and amount of help, access to and administration of medications, failures in communication, fear of being sick alone and concerns about activities of daily living are relevant²⁹. In transition care, the desire also emerges that the care is individualized, integrated, centered on the needs of the client, with the patient’s involvement in decision-making so that they feel supported when dealing with increased levels of frailty¹⁸. Conversely, it can be seen that the transition of care can be impaired due to fragmentation in the provision of services, the loss of control over the process in a scenario of reduced functionality, adaptation and uncertainties surrounding future support¹⁸.

For frail older adults, satisfaction with the ability to take care of oneself, having ten or less symptoms and not feeling lonely, had the best explanatory power for the frail experiences of older adults in good health due to the possibility of managing and maintaining their daily lives.⁴. Frail older adults with more limitations report more need of care, whether received or not received, in all domains. One study found that a younger age and a higher educational level were associated with the presence of unmet needs, a presumed cohort effect as this population is likely to have a higher expectation of health services⁶.

Interpersonal relationships in care for frail older adults

This category introduces the various relational aspects that modulate the care of the frail older person in the community. Interpersonal relationships, social contact, intervention in community contexts were particularly valued by this group^{14,23,31,35,36} as fundamental for prevention, adherence to interventions and the reduction of frailty²³.

Having a goal in life, feeling useful and remaining socially active can lead to fewer medical interventions - a perspective desired by this public²³. The studies highlighted the importance of being interested in the experiences of frail older adults; offering home visits, listening and providing psychosocial support in the community²³; and recognizing the incidence of anxiety and depression in this population³¹. Similarly, another study maintains that the family support network, relatives, neighbors and friends reduced anxiety, hospitalization, and were recognized as fundamental to well-being³⁵. There is a correlation between social support and resilience, contributing to a better quality of life for older adults^35,37. Social and community life is expressed as a possibility for compensating for losses⁴². Likewise, social ties with family members, neighbors, caregivers, local authorities emerge as an important source of meaning³⁰. The social roles played by older adults and their social networks change over time, with frail older adults tending to maintain a small network because of the difficulty of establishing a new network due to frailty and being selective in the search for relationships³⁰.

Another factor is to recognize loneliness as a potential clinical problem for the frail older adult, who uses health services more often³⁹. One study addresses the perception of frail older adults about existential loneliness based on the Emmy van Deurzen theoretical model. In this model the life of older adults is characterized by waiting, experiencing different loss processes: in their social environment, social roles, and in their body, among others³³. In this article, the scientific evidence on the care process for the frail older adult indicates that, in the older person’s view, being connected through social relationships does not mean a great number of contacts, but rather deep conversations about significant issues, while, on the other hand, a feeling of existential loneliness arises when the choices made disregard the opinions of older adults³³. Similarly, the literature recognizes that a feeling of depersonalization can occur when older people are not involved in decisions².

Another study shows that the significant union with relatives, friends and the health team (through person-centered care), as well as the experience of living a meaningful life and of having their feelings recognized, relieve existential loneliness and contribute to the process of care²⁶. The prevalence of feelings of loneliness in the frail older population is similar to that of other older adults. However, more frail and lonelier older adults had worse general physical and psychosocial health conditions and used health services more than non-lonely individuals³⁹.

The meanings of life for frail older adults may still be within the scope of their different needs. In the light of Derkx’s theoretical model, the needs for the frail older person were: to continue their daily activities, to have a purpose for the future, to pursue hobbies, to maintain a connection with their children and grandchildren; to evaluate their way of life as morally worthy; to maintain the level of control and autonomy in their lives; to value themselves, to be recognized and respected by others; to realize the continuity of their identity; to maintain a connection to relatives and friends as a support to others despite being frail, or a connection in the spiritual realm; feelings of excitement through transcendence via art, culture, nature and the events of life³⁰. Thus, the loss or scarcity of meaning manifests itself as a result of aging or a restricted connection network, which may occur due to a lack of purpose, coherence or connection, thus, the importance of the social environment is evident in maintaining the meaning of life³⁰. The results and discussion are summarized in Figure 2.

Source: Prepared by the authors.

Figure 2 Scientific evidence about the process of care of frail older adults residing in the community, from the perspective of the older adults. Belo Horizonte, Minas Gerais, 2019. 

Limitations of the present review include the fact that it does not address the perspectives of other actors involved in the care settings for frail older adults in the community. However, it contributes to considerations of the point of view of frail older adults, which is little known^11,18 when planning health actions and public policies aimed at such individuals. Thus, considering the psychosocial needs of frail older adults⁶ provides insights into the risks that this population group perceives as a priority²⁸ and their coping strategies⁴⁰.