Elderly and caregiver demand: proposal for a care need classification

Anciano y demanda de cuidador: propuesta de clasificación de la necesidad de cuidado

ABSTRACT

Objective:

To propose a care need classification for elderly people by identifying their functional demands.

Method:

Cross-sectional study carried out in São Paulo, in 2006, with 1,413 elderly (≥ 60 years old), participants in the Health, Well-being and Aging study (SABE – Saúde, Bem Estar e Envelhecimento). For the care need classification, we used the Guttman Scaling method e the frequency of assistance required by the elderly.

Results:

The hierarchy of activities of daily living had good internal consistency (α = 0.92) and satisfactory coefficients of reproducibility (98%), scalability (84%) and minimum marginal reproducibility (87%). Care need was categorized into: no need (requires no caregiver), minimum need (requires caregiver sporadically), moderate need (requires caregiver intermittently) and maximum need (requires full-time caregiver).

Conclusion:

This classification will allow identifying elderly that need assistance in everyday activities and will orientante health professionals in the development of a line of care.

Descriptors:
Elderly; Frail Elderly; Everyday Activities; Caregivers; Geriatric Nursing

RESUMEN

Objetivo:

Proponer una clasificación de la necesidad de cuidado de las personas ancianas mediante la identificación de sus demandas funcionales.

Método:

Estudio transversal realizado en el municipio de São Paulo, en el año del 2006, con 1413 ancianos (≥ 60 años) participantes en el Estudio SABE (Salud, Bienestar y Envejecimiento). Para clasificación de la necesidad de cuidado se utilizaron el método de Escalamiento de Guttman y la frecuencia de ayuda requerida por el anciano.

Resultados:

La jerarquización de las actividades de la vida diaria presentó buena consistencia interna (α=0,92) y satisfactorios coeficientes de reproductibilidad (98 %), de escalabilidad (84 %) y de reproductibilidad mínima marginal (87 %). Se categorizó la necesidad de cuidado en: sin necesidad (no necesita cuidador), necesidad mínima (demanda cuidador de manera ocasional), necesidad moderada (requiere cuidador intermitente) y necesidad máxima (demanda cuidador en tiempo integral).

Conclusión:

Esta clasificación permitirá identificar a los ancianos que demandan ayuda en las actividades cotidianas y orientará a los profesionales de salud en la elaboración de una línea de cuidados.

Descriptores:
Anciano; Anciano Fragilizado; Actividades Diarias; Cuidadores; Enfermería Geriátrica

RESUMO

Objetivo:

Propor uma classificação da necessidade de cuidado de pessoas idosas por meio da identificação de suas demandas funcionais.

Método:

Estudo transversal realizado no município de São Paulo, no ano de 2006, com 1413 idosos (≥ 60 anos) participantes do Estudo SABE (Saúde, Bem-Estar e Envelhecimento). Para classificação da necessidade de cuidado foram utilizados o método de Escalonamento de Guttman e a frequência de ajuda requerida pelo idoso.

Resultados:

A hierarquização das atividades de vida diária apresentou boa consistência interna (α=0,92) e satisfatórios coeficientes de reprodutibilidade (98%), de escalabilidade (84%) e de reprodutibilidade mínima marginal (87%). Categorizou-se a necessidade de cuidado em: sem necessidade (não necessita de cuidador), necessidade mínima (demanda cuidador esporadicamente), necessidade moderada (requer cuidador intermitente) e necessidade máxima (demanda cuidador em tempo integral).

Conclusão:

Esta classificação possibilitará a identificação de idosos demandantes de auxílio nas atividades cotidianas e direcionará os profissionais de saúde na elaboração de uma linha de cuidados.

Descritores:
Idoso; Idoso Fragilizado; Atividades Cotidianas; Cuidadores; Enfermagem Geriátrica

INTRODUCTION

The growing aging of Brazilian population, resulting from demographic changes, and the consequent epidemiological changes increased the number of diseases and chronic illnesses accompanied or not by situations of higher dependence among individuals. Such growing demands are a major challenge for public policies (in particular the health and social ones), for being associated with a reorganization in the care provided in a scope of significant changes in family structures and peculiarities of assistance regarding elderly people in a country with many inequalities⁽¹⁾.

The care involves feelings, actions and moral attitude, and the last two aim to relieve, satisfy, comfort and support those who require care, while emotions (feelings) strengthen interpersonal ties and bonds with different social and cultural structures⁽²⁾. Thus, the care process can be understood as a phenomenon that is intentional and essential to life, being the needs of individuals the main condition that precedes health care⁽³⁾.

The National Health Policy for the Elderly (PNSPI – Política Nacional de Saúde da Pessoa Idosa), 2006 reedition, established as a structuring guideline of assistance services for this group the functional capacity evaluation, since it determines the independence level of these people for their everyday activities and, consequently, the assistance required⁽⁴⁾. When the need for assistance is higher than the ability of self-care of the elderly, the assistance of another person, called “caregiver”, will be needed⁽⁵⁾.

Traditionally, caregivers were divided into “formal” or “informal” profesionals; however, the most suitable denomination is “family/aggregate caregivers” and “professional caregivers”, noted that the caregiver in our field still is an occupation, even though it has already been approved as a profession in the Brazilian Federal Senate in 2012⁽⁵⁾. What differentiates them are the affectional bonds, family ties, presence or absence of remuneration or training for the the activity^(5-6).

Studies on family caregivers show that, even currently, most are female, have family ties with the elderly person (specially spouses and daughters), consist of mature adults or in the process of aging and report providing continuous or intermittent care⁽⁷⁾. Depending on the demand required by the elderly person on assistance terms, the provision of care may demand from the caregiver a life restructuring, in terms of changing customs, routines, habits⁽⁸⁾, which is not always simple or easy, and may be accompanied by feelings of tension and angst, leading, even, to the overload⁽⁹⁾. In such circumstances, caregivers can, on one hand, ignore their own needs or, on the other, neglect the care to those who they are responsible for.

The provision of care, however, is a responsibility legally shared between State, society and family, as prescribed in the Federal Constitution, in PNSPI and in the Brazilian Senior Citizen Statute^(4,10-11). In some developed countries, where the elderly population is more prevalent, there is an assistance restructuring shared between State, family and society, to provide long-term care and social support to ensure some support for more dependent elderly person.

In Netherlands, for example, family members and volunteers are considered the main care providers; however, the State gives support with services to replace such caregivers in shorter or longer periods, thus ensuring their formal rest. In Sweden, the State is the main funder and provider of formal caregivers⁽¹²⁾. In Brazil, there are still no long-term care policies established. Most families assume the task of provide care. Although there are community associations and home care services (public and private), that, in any way, collaborate in the provision of assistance, do not replace the first and, in the absence of these communities, such programs cannot be implemented⁽¹³⁾.

We must understand that talking about demand of care does not mean talking about only one thing. Such demand can be stratified from minimum to total, depending on the evaluation of the elderly person. In our area, however, it is not yet clearly established the stratification of such care and its relationship with the need of a caregiver, although there are several instruments that establish the degree of dependency of the elderly. The classification is useful in assisting elderly people to develop their everyday activities, since they contribute in objective determination of the care demanded by a caregiver assisting families in reorganizing their assistance dynamics and the services and professionals, directing their actions, to make them more effective and resolutive. Such classification may also favor the organization of assistance policies for this group, once it collaborates in a line of specific care to the demands evidenced, considering all resources identified to ensure the best quality of life of the elderly and their surroundings.

OBJECTIVE

To propose classification of care need for elderly people by identifying their functional demands.

METHOD

Ethical aspects

The SABE Study began in 2000, as a multicenter study in Latin America and Caribbean. This study was submitted and approved by the National Committee for Ethics in Research (CONEP – Comissão Nacional de Ética em Pesquisa). From 2006 on, and on average every five years (2010, 2015), the elderly of the study were located, interviewed again and new cohorts were introduced (60-64 years old). In each of these moments, the study was submitted and approved by the Committee for Ethics in Research (COEP – Comitê de Ética em Pesquisa) of the School of Public Health of the University of São Paulo.

Study design, place and period

This article is part of the SABE Study and is a cross-sectional study that used the database collected in 2006 with the elderly population sample living in São Paulo.

Sample and inclusion and exclusion criteria

The SABE Study is a longitudinal study of multiple cohorts, which began in 2000, when 2,143 individuals with ≥ 60 years (cohort A), both sexes, not institutionalized, selected by probability sampling were interviewed. The detailing of the sampling design is described in the previous publication⁽¹⁴⁾. In 2006, the elderly of the cohort A were located, interviewed again (n=1,115) and cohort B was added, a new probabilistic sample of the population (60 and 64 years old) that year (n=298), totaling 1,413 elderly. The same was repeated in 2010, when individuals of the cohorts A and B were located, interviewed again (n=990) and a new cohort (cohort C, 60-64 years old was added (n=355), totaling 1,345 elderly.

For this study, the 2006 database was used, with 1,413 elderly interviewed, which represented the elderly population that year, living in the urban area of São Paulo.

Study protocol

In the 2006 cohorts, data were collected between March 2006 and December 2007, through home interview, by applying specific questionnaire, conducted by trained staff. The questionnaire had data on living conditions, state of health, anthropometric measurements and physical performance tests of the elderly. Previous publication describes in detail the field work for data collection⁽¹⁵⁾.

In this study, the care need was defined as the demand of the elderly in requiring assistance to carry out activities of daily living due to the presence of functional impairment.

The functional performance of the elderly was evaluated by the report of difficulty in conducting basic (BADL) and instrumental activities of daily living (IADL). The BADL evaluated were: bathing, dressing, toileting, transferring (getting in and out of bed/into out of chair), walking (walking through a room), personal hygiene (washing and drying hands, brushing teeth, combing hair, shaving and/or putting on makeup) and eating a dish in front of him/her. The IADL considered were: preparing hot meals, managing personal medications, shopping, managing personal finances, using the phone, heavy and light housework and transportation.

Previous studies indicate hierarchy of functional loss in elderly population^(16-17). Thus, the functional decline would start in more complex activities, hierarchically progressing until compromise the performance of less complex activities, causing higher level of dependency. For this evaluation, the Guttman Scaling was used by relating it to the functional performance reported by the elderly evaluated. The scale of hierarchy was constructed by an arrangement of the answers according to the frequency of their appearance. Thus, the answer to a selected item incorporates the idea of answer to an item previous to it in the scale. It must follow a logic and, otherwise, it will be classified as “error”⁽¹⁸⁾.

In this study, the use of Guttman Scaling method allowed the following interpretation: an elderly who reports difficulty in performing an activity placed in lower level in the scale and, therefore, an activity that has lower frequency of difficulty, is possibly unable to perform all other activities above in the scale, since they have a higher frequency of difficulty reported. Similarly, those who report no difficulty in an activity at the top of the scale (activities with larger proportion of people that reported such difficulty), will possibly be able to perform activities in lower levels of the scale (activities with smaller proportion of people that reported such difficulty)^(16,18).

Thereafter, the hierarchy of difficulties reported in the performance of activities of daily living was constructed, whose results frame the degree of impairment of the functional state of the elderly, with direct repercussion in the need of assistance from another person, according to the frequency of the care offer.

The care need according to the frequency of assistance required by the elderly to perform the activity evaluated (difficulty reported) was established. To determine the frequency of assistance required, the required time in hours/day or days/week used in studies that evaluated the demand for elderly care in long-term services was considered^(19-20). In this study, the frequency for each activity in number of times a day or a week was used. (Chart 1).

Chart 1
Assistance frequency to perform activities of daily living estimation

	Activities of daily living.	Frequency of performance of the activities
Instrumental	Heavy and light housework	At least once a week
	Managing personal finances	At least once a week
	Transportation	At least once a week
	Shopping	At least once a week
	Using the phone	Several times a day
	Managing personal medication	At least once a day
	Preparing meals	At least once a day
Basic	Bathing	At least once a day
	Dressing	At least three times a day
	Toileting	At least three times a day
	Transferring	At least three times a day
	Walking	At least three times a day
	Personal hygiene	At least three times a day
	Eating	At least three times a day

⁽¹⁹⁾e⁽²⁰⁾

Analysis of results and statistics

The analysis of the relationship of hierarchy of activities was evaluated in two stages. The first determined if they were related to each other by means of internal consistency. The internal consistency was obtained by the Cronbach’s Alpha Coefficient, adopting as a reference the alpha value higher than 0.70⁽²¹⁾. The second stage was to test the hierarchy of activities of daily living by means of the Coefficients of Reproducibility (CR), Minimum Marginal Reproducibility (MMR) and Scalability (SC).

The CR measures the adequacy distribution degree of the items of the scale in relation to standards of an ideal scale. This coefficient is calculated based on the total number of errors and total of answers submitted by individuals. We considered as errors the answers presented by individuals that do not match with the standard defined for scaling. The desirable CR proposed by Guttman⁽¹⁸⁾ would correspond to values higher than 0.90 (90%) errors equal or lower than 0.10 (10%). If results obtained were lower than the established, we assumed that the scale obtained does not accept the logic of hierarchy, i.e., the hierarchy is not confirmed.

Regarding the MMR, it evaluates the worst coefficient of reproducibility, i.e., in case of all individuals present errors in all questions. The MMR is calculated based on the number of errors in each item (each activity) and total answer on each item. The SC measures the maximum percent of the reproducibility, which is associated with the scalability after adjustment of data asymmetry. Coefficients with values from 0.60 (≥ 60%) represent the best reading of reality by means of sorting⁽¹⁸⁾.

The processing of Guttman Scaling data was conducted in the Statistical Package for the Social Sciences SPSS for Windows – SPSS 20.0® software and other analyses were conducted in the statistical package Stata® version 11.

RESULTS

Of the 1,413 elderly assessed, 59.4% were female, 58.7% were between 60 to 69 years old, 57.4% reported having a partner, 38.6% mentioned having from four to seven years of schooling and 55.1% reported not having enough income to their needs. More than half of the population (55.0%) mentioned simultaneous presence of two or more chronic diseases, being the most prevalent hypertension (62.7%) and osteoarticular disease (33.1%).

The first evaluation regarding the Guttman Scaling (to identify whether the activities were related to each other) found satisfactory index (α=0.92).

Among the elderly evaluated, the hierarchy of difficulty proportion in daily activities was: heavy housework (28.8%), managing personal finances (25.0%), transportation (22.7%), shopping (17.4%), light housework (13.2%), using the phone (12.4%), managing personal medicine (11.3%), dressing (9.1%), transferring (8.8%), preparing meals (7.2%), bathing (6.2%), toiletng (5.8%), personal hygiene (4.6%), walking (3.6%) and eating (2.9%). (Figure 1).

Figure 1
Distribution (%) of elderly according to presence of difficulties in activities of daily living, São Paulo, Brazil, 2006 (N=1413)

Figure 2
Description of care need levels according to impairment in basic and instrumental activities of daily living and care frequency estimate

Note: atividades básicas (ABVDs) e instrumentais de vida diária (AIVDs).

This scale had 98% coefficient of reproducibility (CR), 2% of error probability, 84% of scalability coefficient and 87% minimum marginal reproducibility. Considering that the indexes were very satisfactory, we proceeded to the care need classification.

Based on the hierarchy of activities, the elderly were classified according to the levels of care need. The elaboration of levels considered frequency of assistance and time of permanence of the caregiver in provision of care, as follows:

a)No need: elderly does not require assistance of another person, because reports no difficulty to perform BADL or IADL.

b)Minimum need: elderly requires a sporadic caregiver, i.e., on a weekly basis to assist in performing at least one of the following activities: heavy housework, managing personal finances, transportation, shopping, light housework and using the phone. In this level, the elderly presents no difficulty in other activities.

c)Moderate need: elderly needs daily assistance to perform activities but only requires the presence of a sporadic caregiver when performing the activity(ies). In this case, elderly will report difficulty in performing at least one of the activities (taking personal medications, dressing, transferring and preparing meals); he/she can also have reported difficulty in some of the activities such as: heavy housework, managing personal finances, transportation, shopping, light housework and using the phone. In this level, the elderly reports no difficulty in bathing, toileting, personal hygiene, walking and eating.

d)Maximum need: elderly requires a full-time caregiver, because he/she presents difficulty in performing at least one of the following activities: bathing, toileting, personal hygiene, walking and eating. He/she can also report impairment in some of the activities such as: heavy housework, managing personal finances, transportation, shopping, light housework and using the phone, managing personal medications, dressing, walking and preparing meals.

According to this classification, 53.3% of the elderly evaluated were independent of care, 26.7% had minimum need, 10.5% had moderate need and 9.4% had maximum need (Figure 3).

Figure 3
Distribution (%) of elderly according to care need, São Paulo, SABE Study, 2006. (N=1413)

DISCUSSION

First, we identified, in the hierarchy of the difficulties reported regarding the performance of activities of daily living, the functional impairment starts on BADL and then progresses to the IDLA. This confirms the results of other studies^(17,22-23) and points out that, during the aging process, the loss of skills to perform these activities occurs first on those considered more complex, evolving into the simplest ones⁽²⁴⁾.

Regarding the indexes of the Guttman scale, we observed satisfactory coefficients, which confirms the hierarchy of functional loss of activities of daily living. Studies found high intercorrelation (Cronbach’s alpha above 0.70) between the variables of functional measures, pointing the unidimensionality^(17,23).

The care need stratification in levels allows us to identify groups that require assistance of another person and the frequency of such care, which, on its turn, allows us to establish actions that guide caregivers in providing systematized assistance, aiming to prevent the worsening of the disability.

Elderly with minimum care need would demand a caregiver sporadically, i.e., a person whose assistance would be for performing at least one of the activities, such as heavy or light housework, managing personal finances, transportation, shopping and using the phone. These activities are considered complex because they require multiple cognitive functions to be performed, such as memory, executive function and language⁽²⁴⁾. However, when impaired, they do not require a caregiver on a daily basis, but only a reorganization of the house dynamics of the elderly.

“Using the phone” involves the act of calling and receiving calls and, therefore, the elderly may have difficulties, especially when calling, due to the technologies in devices. A person can assist by guiding them over the handling of the device or suggesting the use of devices adapted to ensure the performance of the activity. We decided to include this activity in the classification of the minimum need because elderly require assistance when the activity happens in sporadic moments during the day. Such classification does not underestimate the care to this activity, because it is a mean of communication for the elderly and promotes the social conviviality. In addition, the use of the phone allows them to access various services, including health, to make appointments and requests of emergency services^(23,25).

The moderate care need concerns the demand for an intermittent care, i.e., at least once a day. Activities such as managing personal medications, dressing, transferring and preparing hot meals are included. “Managing personal medicine” requires planning, organization and execution of the procedure. Thus, the responsibility for the management of medicines of the elderly is of caregivers. To be performed safely and efficiently, the nurses are the main source of information, training and support to caregivers⁽²⁶⁾, which can be instructed to organize medications according to the schedule and forms of administration and oriented on possible adaptations to the activity performance. Thus, the caregiver can guide and assist the elderly on managing their medications, even though the continuous permanence to assist is not required.

The “preparation of hot meals” is an activity related to feeding behavior and cultural issues, however, when the elderly requires assistance to both, the presence of a full-time caregiver is not required. Regarding the “getting dressed” activity, it requires strength of upper and lower limbs, flexibility, fine motor skills and balance. Consequently, a progression in the dependence degree⁽²⁷⁾ may be stated when such activity is impaired, however, it does not require a full-time caregiver.

Elderly with maximum care need require a full-time caregiver to attend to their demands at least three times a day. The signaling activities of such need were bathing, toileting, personal hygiene, transferring and eating, because they required continuous assistance and supervision.

From the activities mentioned, only bathing can be performed once a day or in accordance with the cultural aspects of the elderly; however, we chose to maintain it to characterize the most significant dependence, since studies indicate that it is a guiding activity of disability in more advances stages. Therewith, the difficulty in bathing is determinant of morbidity, mortality and need for home assistance services for elderly⁽²⁸⁾.

Studies state that activities such as “getting in and out of bed/into out of chair”, “combing hair” and “bathing” are considered essential. Thus, when they require assistance to be conducted, the presence of another person is important for them to be executed with some safety and regularity. It reiterates that impairment in such activities highlights the need for someone more permanent next to the elderly⁽²⁹⁾.

Eating a ready dish standing in front of the elderly is considered a simpler task and, therefore, the impairment in its execution is delayed⁽²⁴⁾. In our study, such activity showed lower impairment reported by the elderly. Its presence indicates a degree of severe impairment and demands a full-time caregiver. Nurses must guide caregivers for this activity, focusing on actions that minimize the decline in ability to eat, for example, by using assistive tools that encourage modified independence. On the other hand, if not possible, training must be geared toward teaching the recognition of cognitive and physical function and environmental factors⁽³⁰⁾.

As limitation of our study, we highlight that the evaluation of the perception of the elderly with functional impairment was not evaluated on the need for assistance, therefore, some may present modified independence. Such independence occurs when the elderly use assistive devices to perform the impaired activities, and it may or not require a caregiver. Thus, the care need classification is subjective and can be used to reflect a patient-centered approach, which recommends people to be seen as responsible for their health needs.

Finally, this classification will be able to identify, through the activities of daily living, the demand for caregivers and the estimated frequency that they will have to provide the care. It will also guide the referral to a broader evaluation of the long-term care needs.

CONCLUSION

The development of the care need classification through the hierarchy of activities of daily living and frequency of required assistance reflects the demand of the elderly for a caregiver. We highlight that this hierarchy had good internal consistency and satisfactory coefficients of reproducibility, scalability and minimum marginal reproducibility.

Also, we emphasize that nurses will be able to identify demands of elderly people, potential caregivers and the care need support required by them. Furthermore, such professionals, in partnership with caregivers, will still be able to systematize the care provided at home, focusing on the actions of health promotion, prevention of illnesses and maintenance of functional capacity. Therewith, caregivers should be the focus in the process of care, since they can be overloaded with assigned activities and generate negative impact on quality of life and in relationships with the elderly.

Finally, this classification may encourage the establishment of a line of care, based on the demands of the elderly, taking into consideration family and their resources, aiming the adaptation and suitability of individual circumstances for the sake of improvement of care conditions to this vulnerable part of the population.

• FUNDING
  Coordination for the Improvement of Higher Education Personnel (CAPES).

ACKNOWLEDGEMENTS

To the Professor Maria Lúcia Lebrão (in memoriam), due to the opportunity of participating in the Health, Well-being and Aging study (SABE – Saúde, Bem Estar e Envelhecimento), coordinated by her, and to the valuable contributions to the research development.

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Publication Dates

• Publication in this collection
  2018

History

• Received
  20 Mar 2017
• Accepted
  11 June 2017