Abstract
Background:
Dementia had effect on the dependence status of the elderly. Living in family can increase independence among elderly. The purpose of the study was to determine the effectiveness of home care intervention on the family’s ability to conduct caregiving at home as well as the independence of the elderly with dementia. Also, to determine the effect of family ability to conduct caregiving at home on the independence of the elderly with dementia.
Design and Methods:
This study used quasi-experimental with cross-sectional design. The sample size was 40 respondents into two groups and it was selected using simple random technique. Data were collected from January to June 2021. The intervention group received home care intervention, and the control group did not receive any treatment. The outcome was measured using questionnaire and analyzed using paired t-test and linear regression test.
Results:
This study showed that home care intervention is effective in improving the family’s ability to do home care (p value <0.05) as well as the independence of the elderly with dementia (p value <0.05). In addition, the ability of family to conduct caregiving at home had effect on the independence of the elderly with dementia (p value <0.05).
Conclusion:
The home care intervention was effective in improving family ability and independence of elderly with dementia. This intervention was developed based on caregiver empowerment. It can be the guideline of family to conduct home care.
Keywords: Family, elderly, independence, dementia
Introduction
Dementia is a degenerative disease that requires long-term care, which is generally experienced by people aged over 60 years.1,2 Several programs have been carried out as an effort to provide support for the independence of the elderly In Indonesia, but there has been no specific program for the elderly with dementia that involves the role of the family caregiving. 3 The quality of life among elderly can be affected by place of residence. Previous studies have shown that the elderly who live at home can improve the independence, especially for their activity daily living, verbal communication, cognitive, and behavior. 4 The priority of elderly care is in their home environment through home care. 5
Elderly with dementia had symptoms such as cognitive disorders, inability to communicate, decrease of activity daily living, aggressive behavior, and lead to dependence as well as decrease of quality of life. 6 In addition, the brain function of elderly decreases and has effect on independence. 7 Further, they also had experience neurological deficit and related to the balance, 8 dependence of behavioral, such as urinary incontinence 9 and dependence of activity daily living. 10
The symptoms can be worse if the elderly was not carried out properly by health services or from their family. 11 The provision of home care services can be carried out by nurses and family members. 12 Elderly who lived with their family can increase their independence. 13 Because family has a key role, especially for conducting home care. However, the phenomenon in Indonesia shows that home care is carried out only by nursing staff from primary health care as well as from hospital, 14 so it is necessary to develop the implementation of home care that was carried out by family members. The previous study is still focused on caregiver burden. 15 Family has five basic functions, namely affective functions, socialization, reproduction, economy, and health care or maintenance. It was expected home care by family members can prevent health problems. 16 The purpose of the study was to determine the effectiveness of home care intervention on the family’s ability to conduct caregiving at home as well as the independence of the elderly with dementia. Also, to determine the effect of family ability to conduct caregiving at home on the independence of the elderly with dementia.
Method
This study was already granted by ethical clearence from Nursing Faculty, Universitas Airlangga, number 2139-KEPK. We selected 40 families who had elderly with dementia using simple random technique, 20 participants in the treatment group and 20 participants in the control group. The minimum total sample size for experimental study based on recommendation was 15 participants in the group.17,18 This study used a quasi-experimental method with a cross-sectional design. The data was collected from January to June 2021. The inclusion criteria of this study were: families who had elderly with dementia, the elderly suffering dementia less than 5 years, and extended family type. The exclusion criteria of this study were family who take care the elderly with physical or mental illness or disability such as: blindness, deafness, and muteness and the elderly undergoing treatment as inpatient in hospital or primary health care center.
Intervention module
The home care intervention module was developed from caregiver empowerment theory. 19 This module consists of concept of elderly with dementia, elderly program in health care, family support, family environment, activity daily living of elderly, emotion management, modality therapy for elderly with dementia. The application of module was health education, training, and accompaniment. Families were treated eight sessions for 8 weeks: two sessions for education, two sessions for training, and 4 sessions for accompaniment for conducting home care for elderly with dementia.
Clinical measurement
Family caregiving at home
Family caregiving at home was measured using Care Giver Outcomes. 19 It was used to measure the ability of family to take care the elderly with dementia. It has three indicators perceived health, perceived growth, and existential wellbeing. The questionnaire using Likert scale with range between 25 and 100.
Elderly independence
Elderly independence was measured using Dementia Elderly Self-reliance Card. 11 It has four indicators: verbal communication, activity daily living (ADL), cognitive and aggressive behavior. This questionnaire has 28 items with Likert scale. The ranges score between 32 and 121.
Analysis the data
Data analysis was used SPSS. Descriptive statistic was used to analyze the characteristic of participants. Chi-square was used to analyze categorical data. Paired T-test was used to analyze pre and post intervention. The regression linier was used to analyze the effect of home care family ability to conduct caregiving at home on the independence of elderly. We used the level of significance 5%.
Results
Participants
Participants in this study were family’s member who take care of elderly with dementia. Table 1 showed the characteristic of respondents. Most of participants were more than 50 years old, female, and house wife in both groups. In addition, in the treatment group most of participants had elementary school education and the income was minimum wage. Further, in the control group, most of participants had bachelor degree and had minimum wage.
Table 1.
Characteristic of respondents.
| Characteristic | Treatment | Control | Chi square | ||
|---|---|---|---|---|---|
| Frequency (f) | Percentage (%) | Frequency (f) | Percentage (%) | ||
| Age (years) | |||||
| <35 | 2 | 10.0 | 5 | 25.0 | 0.758 |
| 36–40 | 0 | 0.0 | 3 | 15.0 | |
| 41–45 | 2 | 10.0 | 2 | 10.0 | |
| 46–50 | 1 | 5.0 | 0 | 0.0 | |
| >50 | 15 | 75.0 | 10 | 50.0 | |
| Gender | |||||
| Male | 5 | 25.0 | 7 | 35.0 | 1.000 |
| Female | 15 | 75.0 | 13 | 65.0 | |
| Occupational | |||||
| Farmer | 0 | 0.0 | 1 | 5.0 | 1.000 |
| Self-employee | 4 | 20.0 | 7 | 35.0 | |
| Civil servant | 1 | 5.0 | 2 | 10.0 | |
| House wife | 15 | 75.0 | 10 | 50.0 | |
| Education | |||||
| Not finished school | 2 | 10.0 | 1 | 5.0 | 0.560 |
| Elementary school | 9 | 45.0 | 1 | 5.0 | |
| Junior high school | 2 | 10.0 | 3 | 15.0 | |
| Senior high school | 5 | 25.0 | 4 | 20.0 | |
| Bachelor degree | 2 | 10.0 | 11 | 55.0 | |
| Income | |||||
| <Minimum wage | 15 | 75.0 | 8 | 40.0 | 0.924 |
| Minimum wage | 3 | 15.0 | 7 | 35.0 | |
| >Minimum wage | 2 | 10.0 | 5 | 25.0 | |
The effect of home care intervention on the ability of family to conduct caregiving at home
We measured the ability of family to conduct caregiving by comparing the results before and after interventions in the treatment group and the control group. Table 2 showed the results of the family’s ability to conduct home care before and after the intervention. The average score in the treatment group increased for each indicator with a p-value ≤ 0.05. It was indicated that there were differences in the ability of family to conduct caregiving at home before and after intervention. The average score of family ability to conduct caregiving in the control group showed decrease between pre and posttest with p-value ≥ 0.05. It was indicated that there was no difference before and after the intervention in the control group.
Table 2.
Outcome analysis of home care intervention on the ability of family to conduct caregiving at home (n = 40).
| Group | Indicator of family ability | SD | △ | t | p | ||
|---|---|---|---|---|---|---|---|
| Treatment | Perceived health | Pre | 57.30 | 6.594 | 18.25 | 8.395 | 0.000* 0.000* |
| Post | 75.55 | 6.501 | |||||
| Perceived growth | Pre | 59.80 | 7.113 | 17.1 | 8.967 | ||
| Post | 76.90 | 6.164 | |||||
| Existential Well Being | Pre | 51.40 | 9.389 | 22.25 | 10.913 | 0.000* | |
| Post | 73.65 | 6.055 | |||||
| Control | Perceived health | Pre | 60.35 | 7.909 | −1.40 | 1.127 | 0.274 |
| Post | 58.95 | 9.784 | |||||
| Perceived growth | Pre | 60.30 | 9.625 | −0.30 | 1.101 | 0.285 | |
| Post | 60.00 | 9.503 | |||||
| Existential Well Being | Pre | 58.85 | 7.492 | −1.90 | 1.554 | 0.137 | |
| Post | 56.95 | 8.781 |
The effect of home care interventions on the independence of the elderly with dementia
Table 3 showed the results of the independence of elderly with dementia before and after the intervention in the treatment and control group. The average score in the treatment group has increased, including indicators of verbal communication, activity daily living (ADL), cognitive and behavior, with p value ≤0.05, it was indicated that there were differences in the independence of the elderly with dementia before and after intervention on each indicator. While the average score of the independence of the elderly with dementia in the control group showed decrease with p-value ≥ 0.05. It was indicated that there was no difference before and after the intervention in the control group.
Table 3.
Outcome analysis home care intervention on the independence of the elderly with dementia before and after intervention (n = 40).
| Group | Variable | SD | △ | t | p | ||
|---|---|---|---|---|---|---|---|
| Treatment | Verbal communication | Pre | 62.55 | 8.463 | 9.25 | 3.547 | 0.002* |
| Post | 71.80 | 10.446 | |||||
| ADL | Pre | 58.50 | 9.660 | 11.6 | 3.478 | 0.003* | |
| Post | 70.10 | 12.490 | |||||
| Cognitive | Pre | 60.95 | 9.389 | 11.3 | 3.937 | 0.001* | |
| Post | 72.25 | 6.055 | |||||
| Aggressive behavior | Pre | 59.95 | 9.439 | 11.3 | 4.961 | 0.000* | |
| Post | 71.25 | 9.172 | |||||
| Control | Verbal communication | Pre | 57.00 | 5.629 | 0.742 | 0.467 | |
| Post | 55.45 | 10.380 | −1.55 | ||||
| ADL | Pre | 57.00 | 6.775 | 1.60 | 1.324 | 0.201 | |
| Post | 58.60 | 7.989 | |||||
| Cognitive | Pre | 58.25 | 7.040 | 0.95 | 0.802 | 0.432 | |
| Post | 57.30 | 8.317 | |||||
| Aggressive behavior | Pre | 59.55 | 7.112 | 0.20 | 0.124 | 0.903 | |
| Post | 59.75 | 9.803 |
The effect of family ability to conduct caregiving at home on the independence among elderly with dementia
Table 4 showed t value of the effect of family ability to conduct caregiving at home on the independence among elderly with dementia was 4.203 ≥ 1.96 and p-value ≤ 0.05. It was indicated that there was an effect of family ability to conduct caregiving at home on the independence of the elderly with dementia.
Table 4.
The influence of the family ability to do home care on the independence of the elderly dementia (n = 40).
| Variable | Coefisien | T Statistics | p |
|---|---|---|---|
| Family ability to conduct caregiving at home | 0.566 | 4.203 | 0.000 |
Discussion
The effect of home care intervention on the ability of family to conduct caregiving at home
The family ability to conduct caregiving at home consist of three indicators such as perceived health, perceived growth, and existential well-being. After home care intervention, the score of these indicators were increase, and the existential well-being had the highest score. This intervention focused on the training for family to provide caregiving at home. Previous study mentioned that home care is also strengthened by caregiver empowerment 20 as well as family as internal caregivers.21,22
Home care interventions are given to families through three stages of activity, the education stage, the training stage and the mentoring stage. The first stage is education stage. The education stage gives the information for family to conduct caregiving at home for elderly with dementia, this stage developed three domains of learning, that was cognitive, affective, and psychomotor aspects.23,24 It was expected family had ability to conduct caregiving at home for elderly with dementia. After intervention, family knew how to conduct caregiving at home for elderly, especially their perceived health, perceived growth, and existential wellbeing.
Family has the ability to conduct caregiving at home for elderly with dementia, especially for existential wellbeing experienced. Family was needed to support the health insurance, transportation, information, recreational therapy, social activities to maintained the cognitive elderly with dementia.25,26
The effect of home care interventions on the independence of elderly with dementia
This study showed that there was an effect of home care interventions on the independence of the elderly with dementia. The independence of the elderly with dementia had four indicators: verbal communication, activity daily living (ADL), cognitive and behavioral indicators. The score of ADL was the highest. Activity Daily Living (ADL) for the elderly was term to describe basic skill to selfcare, such as eating, bathing, and mobility. 27 In this study, family motivated the elderly to take care their selves independently, such bathing, toileting, dressing, and mobilizing.
Elderly with dementia showed several disorders, such as cognitive and memory disorders so they can not to conduct their activities independently. 28 It needs treatment to maintain their cognitive. Home care intervention, especially cognitive stimulation such as physical activity was expected to stimulate their brain function. 29 In this study, we involved the elderly in several activities such as reading, social interaction, and spiritual activity.
The effect of family ability to conduct caregiving on independence among elderly with dementia
The ability of family to conduct home care had effect on the independence among elderly with dementia. Health care delivery models showed that family that was involved in health care can reduce health costs and had many benefits.30,31 Family provides support system including emotional support, instrumental support, and assist the elderly to fulfill activity daily living (ADL) such as eating and bathing, transportation.
Conclusion
This study showed that home care intervention is effective in improving the family’s ability to do home care as well as the independence of the elderly with dementia. In addition, the ability of family to conduct caregiving at home had effect on the independence of the elderly with dementia. The module intervention was developed based on caregiver empowerment. It can be the guideline of family to conduct home care.
Acknowledgments
We would like to thank all the participants. We also thank to Ministry of Research and Technology/ National Research and Innovation Agency for grant support in this study.
Footnotes
Contributions: The authors contributed equally
Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by a Grant of Research Dissertation by Ministry of Research and Technology / National Research and Innovation Agency
Significance for public health: Dementia is a degenerative disease that requires long-term care among elderly. Several programs have been carried out as an effort to provide support for the independence of the elderly, especially involving family to do home care at home. Family is needed to support elderly with dementia. Family can promote health among elderly with dementia.
References
- 1. Rossor MN. Dementia. Lancet 1982; 320(8309): 1200–1204. [DOI] [PubMed] [Google Scholar]
- 2. Kramarow EA, Tejada-Vera B. Dementia mortality in the United States, 2000-2017. Natl Vital Stat Rep 2019; 68(2): 1–29. [PubMed] [Google Scholar]
- 3. Indonesia KR. Profil Kesehatan Indonesia Tahun 2017. Jakarta; 2017. [Google Scholar]
- 4. Boland L, Légaré F, Perez MM, et al. Impact of home care versus alternative locations of care on elder health outcomes: an overview of systematic reviews. BMC Geriatr 2017; 17(1): 20. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5. Knodel J, Chayovan N. Inter-generational family care for and by older people in Thailand. Int J Sociol Soc Policy 2012; 32: 682–694. [Google Scholar]
- 6. Cerejeira J, Lagarto L, Mukaetova-Ladinska EB. Behavioral and psychological symptoms of dementia. Front Neurol 2012; 3: 73. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7. Román GC. Vascular dementia may be the most common form of dementia in the elderly. J Neurol Sci 2002; 203-204: 7–10. [DOI] [PubMed] [Google Scholar]
- 8. Hernandez SS, Coelho FG, Gobbi S, et al. [Effects of physical activity on cognitive functions, balance and risk of falls in elderly patients with Alzheimer’s dementia]. Braz J Phys Therapy 2010; 14: 68–74. [PubMed] [Google Scholar]
- 9. Nakayama N, Suzuki M, Endo A, et al. Impact of dementia on behavioral independence and disturbance. Geriatr Gerontol Int 2017; 17(4): 605–613. [DOI] [PubMed] [Google Scholar]
- 10. Giebel CM, Sutcliffe C, Challis D. Activities of daily living and quality of life across different stages of dementia: a UK study. Aging Ment Health 2015; 19(1): 63–71. [DOI] [PubMed] [Google Scholar]
- 11. Suwa S, Yumoto A, Ueno M, et al. Characteristics of care methods for daily life disabilities in Alzheimer’s type dementia that respect autonomy and independence. Nurs Open 2019; 6(3): 930–941. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12. Townsend AL. Nursing home care and family caregivers’ stress. In: Stephens MAP, Crowther JH, Hobfoll SE, et al. (eds) Stress and coping in later-life families. New York: Taylor & Francis, 2018, pp.267–285. [Google Scholar]
- 13. Burr JA, Mutchler JE. Residential independence among older persons: community and individual factors. Popul Res Policy Rev 2007; 26(1): 85–101. [Google Scholar]
- 14. Pangaribowo EH, Keban YT, Darwin M. Elderly care: a study on community care services in Sleman, DIY, Indonesia. J Aging Res 2020; 2020: 1–11. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15. Tokovska M, Nour MM, Sørensen A, et al. Informal caregivers and psychosocial support: analysis of European Dementia Policy documents. J Public Health Res 2021; 11(1): jphr.2021.416. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16. Friedman MM, Bowden VR, Jones E. Family nursing: research, theory & practice. Upper Saddle River, NJ: Prentice Hall, 2003. [Google Scholar]
- 17. Gay LR, Diehl P. Research methods for business and management. New York: Macmillan Coll Division, 1992. [Google Scholar]
- 18. Fraenkel JR, Wallen NE, Hyun HH. How to design and evaluate research in education, vol. 7. New York: McGraw-hill, 2012, p.429. [Google Scholar]
- 19. Jones PS, Winslow BW, Lee JW, et al. Development of a caregiver empowerment model to promote positive outcomes. J Fam Nurs 2011; 17(1): 11–28. [DOI] [PubMed] [Google Scholar]
- 20. Romagnoli KM, Handler SM, Hochheiser H. Home care: more than just a visiting nurse. BMJ Qual Safety 2013; 22: 972–974. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21. Ris I, Schnepp W, Mahrer Imhof R. An integrative review on family caregivers’ involvement in care of home-dwelling elderly. Health Soc Care Community 2019; 27(3): e95–e111. [DOI] [PubMed] [Google Scholar]
- 22. Sperber N, Van Houtven C, Andrews S, et al. Family caregiver use and value of support services in the VA program of comprehensive assistance for family caregivers. J Long Term Care 2018; 41–50. [Google Scholar]
- 23. Hoque ME. Three domains of learning: cognitive, affective and psychomotor. J EFL Educ Res 2016; 2(2): 45–52. [Google Scholar]
- 24. Nomura M, Makimoto K, Kato M, et al. Empowering older people with early dementia and family caregivers: a participatory action research study. Int J Nurs Stud 2009; 46(4): 431–441. [DOI] [PubMed] [Google Scholar]
- 25. Li H, Tracy MB. Family support, financial needs, and health care needs of rural elderly in China: a field study. J Cross Cult Gerontol 1999; 14(4): 357–371. [DOI] [PubMed] [Google Scholar]
- 26. Leong J, Madjar I, Fiveash B. Needs of family carers of elderly people with dementia living in the community. Australas J Ageing 2010; 20(3): 133–138. [Google Scholar]
- 27. Edemekong PF, Bomgaars DL, Sukumaran S, et al. Activities of daily living (ADLs). Treasure Island, FL: StatPearls Publishing, 2017. [PubMed] [Google Scholar]
- 28. Maioli F, Coveri M, Pagni P, et al. Conversion of mild cognitive impairment to dementia in elderly subjects: a preliminary study in a memory and cognitive disorder unit. Arch Gerontol Geriatr 2007; 44: 233–241. [DOI] [PubMed] [Google Scholar]
- 29. Henskens M, Nauta IM, van Eekeren MCA, et al. Effects of physical activity in nursing home residents with dementia: a randomized controlled trial. Dement Geriatr Cogn Disord 2018; 46(1–2): 60–80. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30. Kalantari AR, Mehrolhassani MH, Shati M, et al. Health service delivery models for elderly people: a systematic review. Med J Islam Repub Iran 2021; 35: 21. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31. Wolff JL. Family matters in health care delivery. JAMA 2012; 308(15): 1529–1530. [DOI] [PubMed] [Google Scholar]