Factors associated with the quality of life of elderly caregivers of other elderly persons

Flesch, Letícia Decimo; Batistoni, Samila Sathler Tavares; Neri, Anita Liberalesso; Cachioni, Meire

doi:10.1590/1981-22562019022.180155

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Revista Brasileira de Geriatria e Gerontologia

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Original Articles • Rev. bras. geriatr. gerontol. 22 (03) • 2019 • https://doi.org/10.1590/1981-22562019022.180155 copy

Factors associated with the quality of life of elderly caregivers of other elderly persons

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

Objective

: To evaluate the association between the double vulnerability of being elderly and a caregiver and quality of life assessed by Control, Autonomy, Self-realization and Pleasure factors (CASP-19).

Method

: 148 elderly caregivers participated in the present study. They were selected for convenience from Brazilian public and private health services - a sample from the study “The Psychological Well-Being of Elderly Persons Caring for Other Elderly Persons in a Family Context”. The variables: caregiver’s state of health, care demands, perception of burden, self-rated health, and quality of life were selected. Descriptive analyses, chi-squared tests, Fisher’s exact test, the Kruskal-Wallis test and analysis of multivariate hierarchical logistics were carried out, with theStepwisecriteria applied for selection of variables.

Results

: The hierarchical multivariate analyses found that number of symptoms and total burden were significantly associated with a poorer quality of life. Elderly persons with three or more symptoms and those with a high burden level were at a higher risk of poor quality of life. The variables number of diseases, burden, and self-rated health compared with the past, were significantly associated with a poorer quality of life.

Conclusion

: It can be concluded that for the elderly caregiver, physical aspects (signs and symptoms, chronic diseases and a perception of health deterioration) combined with burden are the aspects that most influence quality of life.

Keywords:
Caregivers; Elderly; Quality of Life; Health Vulnerability

Universidade do Estado do Rio Janeiro Rua São Francisco Xavier, 524 - Bloco F, 20559-900 Rio de Janeiro - RJ Brasil, Tel.: (55 21) 2334-0168 - Rio de Janeiro - RJ - Brazil
E-mail: revistabgg@gmail.com

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[1] Correspondence
Letícia Decimo Flesch leticiadecimo@gmail.com

Variables of interest	Instruments
Socioeconomic conditions of caregiver	Questions related to the characteristics of the caregiver: age, gender, date of birth, schooling, marital status and whether they perform paid work. The items in this block were tested in the Fibra Study ²²22 Neri AL, Yassuda MS, Moura JG de A, Araújo LF, Siqueira MEC, Santos GA, et al. Metodologia do Estudo Fibra Unicamp sobre fragilidade em idosos em Belém, Parnaíba, Campina Grande, Poços de Caldas, Ermelino Matarazzo, Campinas e Ivoti. In: Neri AL, editor. Fragilidade e qualidade de vida na velhice Dados do Estudo Fibra em Belém, Parnaíba, Campina Grande, Poços de Caldas, Ermelino Matarazzo, Campinas e Ivoti. Campinas: Alínea; 2013..
Physical health of caregiver	Evaluated by a list of self-reported diseases, based on the question: Has a doctor ever told you that you have the following diseases? A list of signs and symptoms that have occurred in the last 12 months. The list of signs and symptoms was based on that used in the SABE Study²³23 Lebrão ML, Duarte YA de O, Pan American Health Organization, editors. O Projeto SABE no município de São Paulo: uma abordagem inicial. 1a ed. Brasília, DF, Brasil: Organização Pan-Americana de Saúde, OPAS/OMS; 2003. and replicated in the Fibra Study²²22 Neri AL, Yassuda MS, Moura JG de A, Araújo LF, Siqueira MEC, Santos GA, et al. Metodologia do Estudo Fibra Unicamp sobre fragilidade em idosos em Belém, Parnaíba, Campina Grande, Poços de Caldas, Ermelino Matarazzo, Campinas e Ivoti. In: Neri AL, editor. Fragilidade e qualidade de vida na velhice Dados do Estudo Fibra em Belém, Parnaíba, Campina Grande, Poços de Caldas, Ermelino Matarazzo, Campinas e Ivoti. Campinas: Alínea; 2013.. The measure of frailty validated by Nunes et al.²⁴24 Nunes DP, Duarte YA de O, Santos JLF, Lebrão ML. Screening for frailty in older adults using a self-reported instrument. Rev Saúde Pública. 2015;49:1-9. was also used, according to the criteria of Fried et al.²⁵25 Fried LP, Tangen CM, Walston J, Newman AB, Hirsch C, Gottdiener J, et al. Frailty in older adults: evidence for a phenotype. J Gerontol A Biol Sci Med Sci. 2001;56(3):M146-156.. This consists of five questions about weight loss, reduced strength, reduced physical activity, walking speed and fatigue. These measures are answered in a dichotomous manner.
Self-assessment of health	Contains a five-point question on how the participant evaluates their overall health, another on how they evaluate health care, a three-point question on how they evaluate their health compared to a year ago, and one on how they evaluate their health compared to other people of the same age. Suggested by Bowling²⁶26 Bowling A. Measuring health: a review of quality of life measurement scales. 3. ed. Maidenhead: Open Univ. Press; 2005. and tested in the Fibra Study²²22 Neri AL, Yassuda MS, Moura JG de A, Araújo LF, Siqueira MEC, Santos GA, et al. Metodologia do Estudo Fibra Unicamp sobre fragilidade em idosos em Belém, Parnaíba, Campina Grande, Poços de Caldas, Ermelino Matarazzo, Campinas e Ivoti. In: Neri AL, editor. Fragilidade e qualidade de vida na velhice Dados do Estudo Fibra em Belém, Parnaíba, Campina Grande, Poços de Caldas, Ermelino Matarazzo, Campinas e Ivoti. Campinas: Alínea; 2013..
Characteristics of elderly care recipient	Age, main health problem, if caregiver resides with the elderly care recipient, if caregiver is the main and/or sole person responsible for them.
Degree of dependence of elderly care recipient in IADLs and BADLs *	Brazilian version of the Lawton and Brody scale²⁷27 Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. The Gerontologist. 1969;9(3):179-86.^,²⁸28 Brito FC, Nunes MI. Multidimensionalidade em Gerontologia II: Instrumentos de avaliação. In: Netto MP, editor. Tratado de Gerontologia. São Paulo: Atheneu; 2007.: evaluates telephone use, transportation, shopping, preparing food, performing household chores, using medication and handling money. The respondent states whether, for each of the actions, they are independent, need help or are totally independent. Katz et al.²⁹29 Katz S, Ford AB, Moskowitz RW, Jackson BA, Jaffe MW. Studies of illness in the aged. The index of adl: a standardized measure of biological and psychosocial function. JAMA. 1963. 21;185:914-9. scale validated for the Brazilian population by Lino et al.³⁰30 Lino VTS, Pereira SRM, Camacho LAB, Ribeiro Filho ST, Buksman S. Adaptação transcultural da Escala de Independência em Atividades da Vida Diária (Escala de Katz). Cad Saúde Pública. 2008;24(1):103-12.. Evaluates the following activities: bathing, dressing, using the toilet, transference, continence and food. The caregiver indicates if the patient needs partial or total help or does not need help for each of these activities
Cognitive dependence of elderly care recipient	Clinical Dementia Rating (CDR): assesses cognitive impairment through six categories: memory, orientation, judgment or problem solving, community relations, home or leisure activities, and personal care. Each category is classified according to the degree of impairment (no change, questionable, mild, moderate and severe). This evaluation is performed through an interview with a person close to the patient.
Satisfaction in quality of life needs	Composed of 19 items answered through a four point Likert type scale (CASP-19)¹⁴14 Hyde M, Wiggins RD, Higgs P, Blane DB. A measure of quality of life in early old age: The theory, development and properties of a needs satisfaction model (CASP-19). Aging Ment Health. 2003;7(3):186-94..
Caregiver burden	An instrument consisting of 22 questions, with answers given through a five-point scale. It was developed by Zarit et al.³¹31 Zarit SH, Reever KE, Bach-Peterson J. Relatives of the Impaired Elderly: Correlates of Feelings of Burden. The Gerontologist. 1980;20(6):649-55. and translated and validated for the Brazilian population by Scazufca³²32 Scazufca M. Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses. Rev Bras Psiquiatr [Internet]. 2002 Mar [cited 2016 Aug 17];24(1). Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-44462002000100006&lng=en&nrm=iso&tlng=en http://www.scielo.br/scielo.php?script=s... (α=0.87). The study by Bianchi³³33 Bianchi M. Indicadores de sobrecarga, estratégias de enfrentamento e sintomas depressivos em idosos que cuidam de outros idosos. [Campinas]: Unicamp; 2015. carried out a factorial analysis of the scale and found three factors. Factor 1 is the domain related to the perception of stresses attached to the role, Factor 2 is the domain of perception of intrapsychic tensions, Factor 3 can be interpreted as the domain related to the presence or absence of competence and negative expectations related to care.

			Comparison between Casp-19 frequencies				Univariate regression analysis values
Variable	n	Categories	<22 %	23-27 %	>28 %	p-value	p -value	O.R.*	CI 95% O.R.*
Gender	143	Male Female	15.56 84.44	24.53 75.47	26.67 73.33	0.402**
Age	143	60-64 65-74 >75	31.11 46.67 22.22	18.27 54.72 26.42	40 31.11 28.89	0.123**
Number of diseases	143	0 (ref.) 1-2 ≥3	20 40 40	15.09 52.83 32.08	28.89 44.44 26.67	0.357**	--- 0.510 0.143	1.00 1.31 1.89	--- 0.59-2.90 0.81-4.42
Number of symptoms	143	0 (ref.) 1-2 ≥3	15.56 37.78 46.67 ^a	15.09 60.38 ^a 24.53	33.33^a 48.89 17.78	0.006**	--- 0.195 0.002	1.00 1.70 4.31	--- 0.76-3.78 1.75-10.62
Level of frailty	143	Robust (ref.) Pre-frail Frail	8.89 35.56 55.56 ^a	24.53^a 49.06 ^a 26.42	20^a 53.33^a 26.67	0.015**	--- 0.754 0.019	1.00 1.14 2.91	--- 0.49-2.65 1.20-7.09
Physical functionality of care recipient (dependence in IADLs and BADLs)	143	0-6 (ref.) 7-12 13	15.56 44.44 40	30.19 37.74 32.08	31.11 42.22 26.67	0.377**	--- 0.233 0.077	1.00 1.59 2.06	--- 0.74-3.41 0.92-4.60
Cognitive Functionality (CDR) of care recipient	143	0-0.5 (ref.) 1-2 3	31.11 28.89 40	49.06 20.75 30.19	53.33 22.22 24.44	0.253**	--- 0.146 0.045	1.00 1.77 2.07	--- 0.82-3.83 1.02-4.22
Total Burden	143	≤19 (ref.) 20-27 ≥28	13.33 26.67 60 ^a	37.74 39.62 ^a 22.64	46.67^a 28.89 24.44	0.001**	--- 0.301 0.003	1.00 1.51 3.09	--- 0.69-3.30 1.46-6.54
Factor 1 burden	137	≤9 (ref.) 10-15 ≥16	17.78 28.89 53.33 ^a	47.92^a 22.92 29.17	43.18^a 31.82^a 25	0.011**	--- 0.510 0.143	1.00 1.31 1.89	--- 0.59-2.90 0.81-4.42
Factor 2 burden	142	≤1 (ref.) 2-3 ≥4	22.22 24.44 53.33	36.54 28.85 34.62	48.89 24.44 26.67	0.057**	--- 0.167 0.003	1.00 1.74 2.98	--- 0.79-3.82 1.44-6.18
Factor 3 burden	140	≤3 (ref.) 4-7 ≥8	28.89 20 51.11	43.14 23.53 33.33	40.91 27.27 31.82	0.321**	--- 1.000 0.087	1.00 1.00 1.85	--- 0.45-2.23 0.91-3.74
Subjective health assessment	143	Good/Excellent (ref.) Fair Poor/Very poor	33.33 57.78 ^a 8.89 ^a	50.94^a 41.51 7.55	64.44^a 35.56 0	0.017***	--- 0.009 0.034	1.00 2.33 4.71	--- 1.24-4.41 1.13-19.70
Subjective health assessment compared to past	143	Better (ref.) Same Worse	8.89 33.33 57.78 ^a	16.98^a 54.72^a 28.30	17.78^a 53.33^a 28.89	0.024**	--- 0.776 0.030	1.00 1.14 2.85	--- 0.46-2.83 1.10-7.34
Subjective assessment of health compared to others	135	Better (ref.) Same Worse	54.76 30.95 14.29	54.72 33.96 11.32	75 17.50 7.50	0.274***	--- 0.121 0.191	1.00 1.76 1.98	--- 0.86-3.61 0.71-5.54

			Comparison between Casp-19 frequencies				Univariate regression analysis values
Variable	n	Categories	<9 %	10-12 %	>13 %	p-Value	p-value	O.R.*	CI 95% O.R.*
Gender	144	Male Female	12.50 87.50 ^a	33.33^a 66.67	18.87 81.13 ^a	0.046**
Age	144	60-64 65-74 >75	30 40 30	25.49 49.02 25.49	33.96 43.40 22.64	0.082**
Number of diseases	144	0 (ref.) 1-2 ≥3	7.50 40 52.50 ^a	21.57 50.98 ^a 27.45	32.08^a 47.17 20.75	0.005**	--- 0.070 <0.001	1.00 2.14 5.01	--- 0.94-4.86 2.05-12.26
Number of symptoms	144	0 (ref.) 1-2 ≥3	12.50 42.50 45	23.53 56.86 19.61	24.53 50.94 24.53	0.081**	--- 0.473 0.044	1.00 1.34 2.48	--- 0.61-2.96 1.03-6.00
Level of frailty	144	Robust (ref.) Pre-frail Frail	7.50 42.50 50	19.61 50.98 29.41	26.42 43.40 30.19	0.086**	--- 0.093 0.013	1.00 2.08 3.10	--- 0.89-4.89 1.27-7.58
Physical functionality of care recipient (dependence in IADLs and BADLs)	144	0-6 (ref.) 7-12 13	17.50 47.50 35	27.45 45.10 27.45	30.19 33.96 35.85	0.492**	--- 0.130 0.470	1.00 1.80 1.34	--- 0.84-3.87 0.60-2.99
Cognitive Functionality (CDR) of care recipient	144	0-0.5 (ref.) 1-2 3	37.50 30 32.50	47.06 23.53 29.41	47.17 22.64 30.19	0.872**	--- 0.357 0.588	1.00 1.43 1.22	--- 0.67-3.03 0.60-2.47
Total Burden	144	≤19 (ref.) 20-27 ≥28	12.50 35 52.50 ^a	31.37^a 27.45 41.18	52.83^a 33.96 13.21	<0.001**	--- 0.017 <0.001	1.00 2.58 6.25	--- 1.19-5.59 2.82-13.84
Factor 1 burden	137	≤9 (ref.) 10-15 ≥16	12.82 35.90 ^a 51.28 ^a	37.50^a 22.92 39.58	54 ^a 28 18	<0.001**	--- 0.010 <0.001	1.00 2.86 4.88	--- 1.28-6.36 2.24-10.64
Factor 2 burden	143	≤1 (ref.) 2-3 ≥4	27.50 15 57.50 ^a	23.53 39.22 ^a 37.25	53.85^a 25 21.15	<0.001**	--- 0.222 <0.001	1.00 1.63 4.13	--- 0.74-3.57 1.96-8.72
Factor 3 burden	141	≤3 (ref.) 4-7 ≥8	35 25 40	37.50 20.83 41.67	43.40 24.53 32.08	0.850**	--- 0.688 0.347	1.00 1.18 1.40	--- 0.53-2.61 0.70 - 2.81
Subjective health assessment	144	Good/Very good (ref.) Fair Poor/Very poor	25 60 ^a 15 ^a	60.78^a 37.25 1.96	58.49^a 39.62 1.89	<0.001***	--- 0.017 0.003	1.00 2.17 11.87	--- 1.15-4.09 2.32-60.68
Subjective health assessment compared to past	144	Better (ref.) Same Worse	12.50 37.50 50 ^a	11.76 47.06 ^a 41.18 ^a	20.75 58.49 ^a 20.75 ^a	0.045**	--- 0.761 0.025	1.00 1.15 2.94	--- 0.47-2.83 1.14-7.54
Subjective assessment of health compared to others	135	Better (ref.) Same Worse	47.22 33.33 19.44	62.50 27.08 10.42	70.59 25.49 3.92	0.125***	--- 0.192 0.013	1.00 1.61 3.96	--- 0.79-3.27 1.33-11.75