The relationship between burden and caregiver’s sleep disturbances in dementia: a systematic review

Monteiro, Bárbara Cristina da Costa; Santos, Tatiana Teresa Belfort Almeida dos; Nogueira, Marcela Moreira Lima; Dourado, Marcia Cristina Nascimento

doi:10.1590/1980-5764-DN-2023-0030

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Dementia & Neuropsychologia

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Original Article • Dement. neuropsychol. 17 • 2023 • https://doi.org/10.1590/1980-5764-DN-2023-0030 copy

The relationship between burden and caregiver’s sleep disturbances in dementia: a systematic review

A relação entre sobrecarga e sono do cuidador na demência: um estudo de revisão sistemática

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT

Caregivers of people living with dementia (PLwD) have a high burden degree that leads to health issues, including sleep.

Objective:

This study aimed to analyze the impacts of the caregiving burden on caregiver’s sleep disturbances.

Methods:

This systematic review involved a qualitative analysis of publications on Web of Science and Pubmed/Medline databases published between February 2018 and August 2022.

Results:

A total of 27 studies were identified and analyzed. Caregiver’s sleep presents impairments in sleep latency, sleep fragmentation, sleep duration, subjective sleep quality, daytime dysfunction, and insomnia. Caregiver’s distress and depressive symptoms have a dual relationship with sleep problems.

Conclusion:

Sleep disturbances presented by caregivers are correlated with higher burden levels and lead to more vulnerability to psychiatric symptoms and health issues.

Keywords:
Sleep Quality; Caregivers; Caregiver Burden; Dementia; Sleep Wake Disorders; Sleep

Study	Design	Sample/Mean age	Objective	Sleep measures instruments	Others instruments	Results	MMAT
Bao et al.²⁵25 Bao X, Xu J, Meng Q, Gan J, Wang X-D, Wu H, et al. Impact of the COVID-19 Pandemic and Lockdown on Anxiety, Depression and Nursing Burden of Caregivers in Alzheimer’s Disease, Dementia with Lewy Bodies and Mild Cognitive Impairment in China: A 1-Year Follow-Up Study. Front Psychiatry. 2022;13:921535. https://doi.org/10.3389/fpsyt.2022.921535 https://doi.org/10.3389/fpsyt.2022.92153... (2022)	Descriptive Longitudinal	177 individuals(61.3 years)	To investigate the effects of the pandemic on anxiety, depression and care burden in caregivers of nursing patients with AD, DLB, and MCI, over a one-year period.	PSQI	ZBI GAD-7 PHQ-9	Sleep disturbances after lockdown in Covid-19 pandemic worsened caregiver burden and psychological status.	5
Blinka et al.²⁶26 Blinka MD, Spira AP, Sheehan OC, Cidav T, Rhodes JD, Howard VJ, et al. Sleep Quality Reports From Family Caregivers and Matched Non-caregiving Controls in a Population-Based Study. J Appl Gerontol. 2022;41(6):1568-75. https://doi.org/10.1177/07334648221079110 https://doi.org/10.1177/0733464822107911... (2022)	Descriptive Cross-sectional	498 individuals (69.2 years)	To evaluate differences in self-reported sleep quality between caregivers and a control group	Self-report	CES-D	Caregivers show long sleep onset latency.	5
Brewster et al.⁷7 Brewster GS, Molinari V, McCrae C, Beckstead J, D’Aoust R, Rowe M. Cognitive Function and Sleep in Caregivers of Persons Living with Dementia. Western J Nurs Res. 2022;44(3):260-8. https://doi.org/10.1177/01939459211041163 https://doi.org/10.1177/0193945921104116... (2022)	Descriptive cross-sectional	28 individuals (65.1 years)	To evaluate sleep quality in caregivers of PLwD and correlate it with cognitive function.	Sleep Diary	–	Caregivers of PLwD showed high amounts of wake after sleep onset and lower sleep efficiency	5
Bussè et al.²⁷27 Bussè C, Barnini T, Zucca M, Rainero I, Mozzetta S, Zangrossi A, et al. Depression, Anxiety and Sleep Alterations in Caregivers of Persons With Dementia After 1-Year of COVID-19 Pandemic. Front Psychiatry. 2022;13:826371. https://doi.org/10.3389/fpsyt.2022.826371 https://doi.org/10.3389/fpsyt.2022.82637... (2022)	Descriptive Longitudinal	151 individuals (62 years)	To assess the severity of long-term stress-related symptoms in caregivers of PLwD one year after the COVID-19 pandemic	PSQI	DASS-21 COPE-NVI	96% of caregivers presented sleep alterations between the four frequently stress-related symptoms	5
Kim and Cha ⁴4 Kim J, Cha E. Effect of Perceived Stress on Health-Related Quality of Life among Primary Caregiving Spouses of Patients with Severe Dementia: The Mediating Role of Depression and Sleep Quality. Int J Environ Res Public Health. 2022;19(13):7962. https://doi.org/10.3390/ijerph19137962 https://doi.org/10.3390/ijerph19137962... (2022)	Descriptive Cross-sectional	399 individuals (<65 - >85 years)	To identify the mediating effects of sleep quality on the relationship between perceived stress and HRQoL among primary caregiving spouses of patients with severe dementia	PSQI	PSS EQ-5DPHQ-9	Caregiving spouses of patients with severe dementiapresented low sleep quality	6
Liu et al. ¹³13 Liu Y, Fauth EB, Fleming DJM, Lorenz R. Daily Sleep and Anxious and Depressive Symptoms Among Dementia Caregivers-The Mediation of Cortisol Total Output on High- and Low-Stress Days. J Gerontol B Psychol Sci Social Sci. 2022;77(8):1406-15. https://doi.org/10.1093/geronb/gbac074 https://doi.org/10.1093/geronb/gbac074... (2022)	Descriptive Cross-sectional	1,073 individuals (61.9 years)	To examine sleep, negative effects, and stress biomarkers from the perspective of stressor exposure and reactivity.	Self-reported Sleep Diary	Non-Specific Psychological Distress Scale Daily Stress and Health	When caregivers have more time in bed, they present lower cortisol levels and anxiety symptoms	5
Lu et al.²2 Lu X, Ye R, Wu J, Rao D, Liao X. Comparing Behavioral and Psychological Symptoms of Dementia and Caregiver Distress Caused Between Older Adults With Dementia Living in the Community and Nursing Homes. Front Psychiatry. 2022;13;881215. https://doi.org/10.3389/fpsyt.2022.881215 https://doi.org/10.3389/fpsyt.2022.88121... (2022)	Descriptive Cross-sectional	269 individuals (≥60 years)	To evaluate caregiver distress between older adults with dementia living in the community and in nursing homes	Sleep domain of NPI	NPI	Sleep disorders are responsible for the most frequent “very severe” caregiver distress	6
Osakwe et al.¹⁹19 Osakwe ZT, Senteio C, Bubu OM, Obioha C, Turner AD, Thawani S, et al. Sleep Disturbance and Strain Among Caregivers of Persons Living With Dementia. Front Aging Neurosci. 2022;13:734382. https://doi.org/10.3389/fnagi.2021.734382 https://doi.org/10.3389/fnagi.2021.73438... (2022)	Descriptive Cross-sectional	1,142 individuals (58.5 years)	To examine predictors of sleep disturbance and strain among caregivers of PLwD.	Self-report	Reported measures	Caregivers with greater sleep difficulty were more likely to report high blood pressure.	6
Pinyopornpanish et al.¹⁶16 Pinyopornpanish K, Soontornpun A, Wongpakaran T, Tanprawate S, Pinyopornpanish K, Nadsasarn A, et al. Impact of behavioral and psychological symptoms of Alzheimer’s disease on caregiver outcomes. Sci Rep. 2022;12:14138. https://doi.org/10.1038/s41598-022-18470-8 https://doi.org/10.1038/s41598-022-18470... (2022)	Descriptive cross-sectional	102 individuals (55 years)	To explore the association between BPSD and caregiver stress, burden, and depression.	Sleep domain of NPI	PHQ-9 ZBI-22 PSS NPI	Caregivers presented sleep disorders and night-time behaviors that impacted caregiver burden and lead to depressive symptoms.	6
Sanprakhon et al.⁶6 Sanprakhon, P., Chaimongkol, N. & Hengudomsub, P. Relationships between caregiving stress and sleep quality among family caregivers of older adults with dementia in Thailand. Belitung Nurs J. 2022;8(3):229-34. https://doi.org/10.33546/bnj.2106 https://doi.org/10.33546/bnj.2106... (2022)	Descriptive Cross-sectional	72 individuals (>18 years)	To examine the relationships between caregiving stress and sleep quality among family caregivers of older adults with dementia.	PSQI	RSS	Caregiving stress is positively correlated with poor sleep quality	5
Vara-Garcia et al.⁵5 Vara-Garcia C, Mausbach BT, Romero-Moreno R, Losada-Baltar A, Jeste DV, Grant I. Longitudinal Correlates of Depressive Symptoms and Positive and Negative Affects in Family Caregivers of People With Dementia. Am J Geriatr Psychiatry. 2022;30(2):148-57. https://doi.org/10.1016/j.jagp.2021.06.011 https://doi.org/10.1016/j.jagp.2021.06.0... (2022)	Descriptive Longitudinal	111 individuals (74.5 years)	To analyze the possible longitudinal effects of various cognitive and behavioral variables on caregivers’ depressive symptoms.	PSQI	WCQ CSES PMS PES-AD PANAS CESD-10	Caregivers with impacts on sleep quality presented higher levels of depressive symptoms	6
Xu et al.¹⁵15 Xu XY, Kwan RYC, Miao J, Chai A, Leung AYM. Telephone-Based Behavioral Activation for Improving Sleep Quality in Family Caregivers of People With Dementia: A Pilot Randomized Controlled Trial. Behav Ther. 2022;53(5):887-99. https://doi.org/10.1016/j.beth.2022.02.007 https://doi.org/10.1016/j.beth.2022.02.0... (2022)	Clinical Trial randomized	71 individuals (54 years)	To test an evidence-based behavioral activation protocol to improve sleep quality in caregivers of PLwD.	PSQI	CES-D	Caregivers had improvement in sleep quality, more perception of positive aspects of caregiving and reduction of depressive symptoms.	5
Hoyt et al.¹⁸18 Hoyt MA, Mazza MC, Ahmad Z, Darabos K, Applebaum AJ. Sleep Quality in Young Adult Informal Caregivers: Understanding Psychological and Biological Processes. Int J Beh Med. 2021;28(1):6-13. https://doi.org/10.1007/s12529-019-09842-y https://doi.org/10.1007/s12529-019-09842... (2021)	Descriptive Cross-sectional	35 individuals (21.1 years)	To examine subjective and objective indicators of sleep quality and diurnal cortisol rhythms among young adult caregivers relative to non-caregiving peers.	PSQI	LCI HADS	Caregivers exhibit more sleep disturbance, greater sleep latency, and more sleep fragmentation.	5
Jiménez-Gonzalo et al.¹⁷17 Jiménez-Gonzalo L, Romero-Moreno R, Pedroso-Chaparro MDS, Gallego-Alberto L, Barrera-Caballero S, Olazarán J, et al. Psychometric properties of the Insomnia Severity Index in a sample of family dementia caregivers. Sleep Med. 2021;82:65-70. https://doi.org/10.1016/j.sleep.2021.03.036 https://doi.org/10.1016/j.sleep.2021.03.... (2021)	Descriptive Cross-sectional	271 individuals (62.9 years)	To analyze the psychometric properties of the ISI in a Spanish dementia caregiver sample.	ISI	POMS CES-D	ISI was significantly associated with lower sleep quality, less average sleep time per day, and lower self-perception of vitality, as well as with higher depressive and anxiety symptoms.	5
Jiménez-Gonzalo et al.²²22 Jiménez-Gonzalo L, Romero-Moreno R, Pedroso-Chaparro MDS, Fernandes-Pires JA, Barrera-Caballero S, Olazarán J et al. The Role of Caregivers’ Sleep Problems in the Association between Behavioral Symptoms of Dementia and Caregiving Depression and Anxiety. Behav Sleep Med. 2021;19(5):640-51. https://doi.org/10.1080/15402002.2020.1835662 https://doi.org/10.1080/15402002.2020.18... (2021)	Descriptive Cross-sectional	264 individuals (62.7 years)	To explore the association between caregiver sleep problems and behavioral problems in care recipients.	ISI	–	Disrupted behaviors in care recipients are associated with poorer sleep of caregivers.	5
Martínez-Santos et al.²⁸28 Martínez-Santos AE, Vicho de la Fuente N, Facal D, Vilanova-Trillo L, Gandoy-Crego M, Rodríguez-González R. Care tasks and impact of caring in primary family caregivers: A cross-sectional study from a nursing perspective. Appl Nurs Res. 2021;62:151505. https://doi.org/10.1016/j.apnr.2021.151505 https://doi.org/10.1016/j.apnr.2021.1515... (2021)	Multi-centric cross-sectional prospective	423 individuals (59.9 years)	Describe the care provided by family caregivers of people with dementia and the impact on their health	Non-Specified	ICUB97-R questionnaire	Most complaints by caregivers are about sleep time or resting less.	7
Rigby et al.²⁹29 Rigby T, Johnson DK, Taylor A, Galvin JE. Comparison of the Caregiving Experience of Grief, Burden, and Quality of Life in Dementia with Lewy Bodies, Alzheimer’s Disease, and Parkinson’s Disease Dementia. J Alzheimer’s Dis. 2021;80(1):421-32. https://doi.org/10.3233/JAD-201326 https://doi.org/10.3233/JAD-201326... (2021)	Descriptive cross-sectional	515 individuals (61.4 years)	To examine the differences in the caregiver experience between DLB, PDD, and AD	Non-Specified	RMBPC CGI ZBI QoL PCI PWB PHQ-2	Caregiver experience of burden depends on the sleep characteristics presented.	6
Sato et al.³⁰30 Sato H, Nakaaki S, Sato J, Shikimoto R, Furukawa TA, Mimura M, et al. Caregiver self-efficacy and associated factors among caregivers of patients with dementia with Lewy bodies and caregivers of patients with Alzheimer’s disease. Psychogeriatr. 2021;21(5):783-94. https://doi.org/10.1111/psyg.12740 https://doi.org/10.1111/psyg.12740... (2021)	Descriptive cross-sectional	126 individuals (64.1 years)	To compare self-efficacy in DLB Caregivers and AD Caregivers	ISI	ZBI BDI-II RSCSE	DLB caregivers present more sleep problems than AD caregivers	6
Song and Kim ³¹31 Song MJ, Kim JH. Family Caregivers of People with Dementia Have Poor Sleep Quality: A Nationwide Population-Based Study. Int J Environ Res Public Health. 2021;18(24):13079. https://doi.org/10.3390/ijerph182413079 https://doi.org/10.3390/ijerph182413079... (2021)	Descriptive Cross-sectional	11,591,278 individuals (55.3 years)	To compare sleep quality between cohabitating caregivers, noncohabitating caregivers, and noncaregivers of PLwD.	PSQI	–	Cohabitating caregivers showed poorer sleep quality when compared to noncohabitating caregivers. Noncohabitating caregivers have poorer sleep quality when compared to noncaregivers.	6
Corey et al.³²32 Corey KL, McCurry MK, Sethares KA, Bourbonniere M, Hirschman KB, Meghani SH. Predictors of psychological distress and sleep quality in former family caregivers of people with dementia. Aging Ment Health. 2020;24(2):233-41. https://doi.org/10.1080/13607863.2018.1531375 https://doi.org/10.1080/13607863.2018.15... (2020)	Descriptive Cross-sectional	171 individuals (>18 years)	To explore the independent associations of sociodemographic variables, personality and coping, environmental variables, and caregiver guilt with the sleep quality of former family caregivers of PLwD following care recipient’s death.	PSQI	BFI BRIEF-COPE CES-D DASS	Personality traits, pre-loss depression, and copping strategies are directly associated with sleep quality.	6
Liang, Aranda and Lloyd ⁹9 Liang J, Aranda MP, Lloyd DA. Association between Role Overload and Sleep Disturbance among Dementia Caregivers: The Impact of Social Support and Social Engagement. J Aging Health. 2020;32(10):1345-54. https://doi.org/10.1177/0898264320926062 https://doi.org/10.1177/0898264320926062... (2020)	Descriptive Cross-sectional	669 individuals (60.3 years)	To explore the association between sleep maintenance insomnia and role overload.	SMI	SPM	Caregivers presents high rates of sleep disturbance.	6
Ryuno et al.¹²12 Ryuno H, Greiner C, Yamaguchi Y, Fujimoto H, Hirota M, Uemura H, et al. Association between sleep, care burden, and related factors among family caregivers at home. Psychogeriatrics. 2020;20(4):385-90. https://doi.org/10.1111/psyg.12513 https://doi.org/10.1111/psyg.12513... (2020)	Descriptive Longitudinal	23 objects (66.9 years)	To identify the association between care burden and objective/subjective sleep quality	PSQI	ZBI	Care burden is significantly associated with total sleep time and PSQI score.	7
Simón et al.³³33 Simón MA, Bueno AM, Otero P, Blanco V, Vázquez FL. Caregiver Burden and Sleep Quality in Dependent People’s Family Caregivers. J Clin Med. 2019;8(7):1072. https://doi.org/10.3390/jcm8071072 https://doi.org/10.3390/jcm8071072... (2019)	Descriptive Cross-sectional	293 individuals (56.2 years)	To examine the relationship between caregiver burden and sleep quality.	PSQI	CBI	Caregiver burden is significantly associated with sleep quality.	6
Eleuteri et al.²¹21 Eleuteri S, Norton MC, Livi F, Grano C, Falaschi P, Violani C, et al. Sleep quality as predictor of BMI in non-depressed caregivers of people with dementia. Eat Weight Disord. 2018;23(5):553-60. https://doi.org/10.1007/s40519-018-0560-8 https://doi.org/10.1007/s40519-018-0560-... (2018)	Descriptive Cross-sectional	117 individuals (54.3 years)	To examine the association between sleep quality and BMI in a population of caregivers of PLwD.	PSQI	Eating Behavior Questionnaire	Caregivers with low depressive symptoms and poor sleep quality have higher BMI scores. Women presents higher BMI scores when compared with males.	6
Legget et al.¹¹11 Leggett A, Polenick CA, Maust DT, Kales HC. (2018). “What Hath Night to Do with Sleep?”: The Caregiving Context and Dementia Caregivers’ Nighttime Awakenings. Clin Geront. 2018;41(2):158-66. https://doi.org/10.1080/07317115.2017.1352057 https://doi.org/10.1080/07317115.2017.13... (2018)	Descriptive Cross-sectional	451 individuals (59.1 years)	To examine caregiver health and psychological wellbeing as predictors of nighttime awakenings.	5-point scale item	–	16% of caregivers reported nighttime awakening every night. Emotional caregiving difficulties predict nighttime awakenings.	4
Liu et al.³⁴34 Liu S, Liu J, Wang XD, Shi Z, Zhou Y, Li J, et al. Caregiver burden, sleep quality, depression, and anxiety in dementia caregivers: a comparison of frontotemporal lobar degeneration, dementia with Lewy bodies, and Alzheimer’s disease. Int Psychogeriatr. 2018;30(8):1131-8. https://doi.org/10.1017/S1041610217002630 https://doi.org/10.1017/S104161021700263... (2018)	Descriptive Cross-sectional	492 individuals (58.2 years)	To compare caregiver burden and sleep quality of patients with frontotemporal lobar degeneration, DLB and AD.	PSQI	ZBI PHQ-9 GAD-7	Caregivers of frontotemporal lobar degeneration and DLB experience more burden and sleep impairments.	6
Polenick et al.¹⁴14 Polenick C, Leggett A, Maust D, Kales H. Medical Care Tasks among Spousal Dementia Caregivers: Links to Care-Related Sleep Disturbances. Am J Geriatr Psychiatry. 2018;26(5):589-97. https://doi.org/10.1016/j.jagp.2018.01.206 https://doi.org/10.1016/j.jagp.2018.01.2... (2018)	Retrospective Analysis Cross-sectional	104 individuals (75.5 years)	To evaluate the association between caregivers’ medical/nursing tasks.	Self-report	–	Caregivers who performed a higher number of medical/nursing tasks reported significantly more frequent care-related sleep disturbances	4

Characteristic		Result (%)
Gender	Female	69.5
Relationship	Partner	18.5
Relationship	Children	33.3
Living with care recipient		71.3
Time spent in care	In years	5.7
Time spent in care	In daily hours	14.3
Age range (y)		60.3

Characteristic		% of articles citing the result
Pittsburgh sleep quality index	<5	3.7
Pittsburgh sleep quality index	>5	40.7
Sleep patterns	Negative sleep latency	18.5
	Sleep fragmentation	14.8
	Shorter sleep duration	7.4
	Low subjective sleep quality	7.4
	Insomnia	3.7
	Daytime disfunction	3.7
	Use of medication	7.4
	Low sleep efficiency	7.4

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E-mail: revistadementia@abneuro.org.br | demneuropsy@uol.com.br

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[1] Correspondence: Bárbara Cristina da Costa Monteiro; Email: psibarbaracmonteiro@gmail.com.