Unseen Strength: Dementia, the COVID-19 Pandemic, and the Resilient Hearts That Never Stopped Caring
Abstract
:1. Introduction
2. Methods
2.1. Study Design
2.2. Participants
2.3. Data Collection
2.4. Analysis Strategy
2.5. Rigor
2.6. Ethical Considerations
3. Results
3.1. Theme 1: Seeking Clarity and Safety Through Pandemic Training
3.1.1. Affected by Confucian Beliefs
“Even if my mother is living with advanced dementia and may no longer recognize me, she remains my mother—the woman who gave me life. This connection feels profoundly natural and essential. She lovingly cared for me when I was young, and I am committed to visiting her at her residential home at least three times a week before COVID-19… Her health is fragile, as her son, I embrace caring for her as my heartfelt responsibility. My dedication won’t waver, bringing peace and preventing guilt. I do this wholeheartedly, ensuring no regrets when she passes, knowing I did everything I could with love and dedication.”(Son, P02)
“I empathize with my mom, knowing older individuals prefer not to be in residential homes. It pains me that others might misunderstand; my demanding work prevents home care, causing helplessness and sorrow. Frequent visits comfort me. During one, I changed her soiled towels, pillowcases, and bedsheet, ensuring her comfort at best I could, wanting to provide care despite limitations.”(Son, P15)
“My assessment is that this residential facility’s care standard falls short of expectations. On several occasions, I’ve observed healthcare workers raising voices or speaking harshly to residents. Securing appropriate local accommodation for my grandmother was challenging and finding a suitable alternative has not yet been possible. Consequently, I visit approximately every three days to monitor the care she is receiving and ensure her needs are adequately addressed. Despite directly requesting workers refrain from using raised voices with my grandmother, this issue persists. Furthermore, engaging social work staff regarding these concerns has not yielded discernible improvement or a formal response.”(Granddaughter, P09)
“My marriage is enduring, lifelong partnership with profound reciprocal obligation. I view my commitment as repaying a ‘life debt’ to my wife, perhaps from a past life, believing we were destined. My devoted care for her now settles this ‘love debt’ without complaint. I am convinced it’s my duty to provide her with the most comprehensive, dedicated care.”(Husband, P21)
3.1.2. Mitigation or Affliction
“Everything about our forty-year marriage as husband and wife is gone. There is no longer any interaction between us. There is nothing to carry on, because you (wife) cannot talk, nor to communicate and share your experience with me … I am not in good health now. It is good to know you have appropriate caring services for daily living in RCH. I feel relieve knowing this is a good place for you to stay.”(Husband, P17)
“As his wife, I will stay with him for a lifetime. There’s a Chinese idiom, ‘Married to a chicken—follow the chicken,’ which means I’ll follow the man I married. The staff at RCH take care of everything. All I do is visit him frequently, sometimes feeding him, and sometimes not. I like to keep doing this. However, now our lives are separated if you understand what I mean. In fact, I feel I already lost him some time ago.”(Wife, P05)
“To ease my guilt, I visit my mom every week before COVID. During these visits, I often check if her hair, eyes, and dentures are clean, and I also trim her fingernails.”(Daughter, P18)
3.2. Theme 2: Family Expectations and Hopes
3.2.1. Support for Nutritional Deficits
“My mother does not sleep much and is not eating well. When she does not eat, she’s not getting the good stuff her body needs from food. This makes me very worried about her health.”(Daughter, P08)
“My dad smiles contentedly after eating the food I provide. To address his ailments, I bring Chinese medicine like Ginseng if he’s unwell, and fruit for constipation, which he enjoys.”(Daughter, P25)
“My grandma, fed only by nasogastric tube due to swallowing difficulties, could not eat orally. I hoped to improve her swallowing, so I helped her practice with mántou (steamed bread), and she succeeded! During each visit, I assisted her with swallowing exercise. Now she eats independently! Doctors and nurses supported removing the tube, encouraging her self-feeding. Aware that RCH staff might lack time for this intensive practice, I committed to personally helping my grandma with her training … Separated by COVID restrictions, I longed to see my grandma. My pain was eased by profound respect for the heroic RCH staff who became our family’s protective shield.”(Granddaughter, P23)
3.2.2. Support for Physical Deficits
“I help Daddy clean his dentures, wash his face, and shave. Because his skin is dry and can get hurt easily if he scratches, I always bring him some lotion to apply.”(Daughter, P12)
“The home seems short-staffed, so residents sit a lot, which can weaken muscles. Walking is good for Mom’s early memory problems. So, when I visit, I always help her walk because she needs support. This keeps her moving and can help her memory.”(Daughter, P18)
3.2.3. Support for Cognitive Deficits
“If I do not visit my father two to three times a week, I am convinced his cognitive abilities would decline rapidly. When I visit, bringing him snacks and engaging in conversation, it compels him to respond and communicate. This interaction, at the very least, provides him with crucial verbal stimulation, and I hope it might slow the decline of his memory. If I were to stop these visits, I am deeply afraid he could enter a vegetative state, and his physical condition would progressively deteriorate.”(Daughter, P19)
3.3. Theme 3: From Red Flags to Resilience and Rebuilding Stronger Relational Bonds
3.3.1. Support for Emotional Deficits
“Although my father no longer recognized me, he’d nervously ask RCH staff, “Has my daughter come to visit?” I sobbed, feeling deep sorrow. During COVID-19 pandemic, there was a lot of regulations for me to follow for my visitation. I will keep visiting to ease him mind and bring him comfort, hoping to make him feel at ease despite his confusion.”(Daughter, P19)
“I remember, before COVID, whenever I visited my grandmother, she would hold my hand. She would often accuse ‘Mrs. Yuen’ in the next bed of being a ‘bad lady.’ She claimed Mrs. Yuen got her, ate her biscuits, and stole her towel and “Red fish” (a $100 note). In fact, staff never gave her money. Each time, I had to listen to her story and comfort her.”(Grandson, P03)
3.3.2. Resolving Conflicts
“Grandpa’s nervous doubts and communication issues test his resilience. When misunderstanding others, his anxiety can lead to conflict, showing his struggle to cope with confusion and maintain peaceful connections despite his internal state and the challenges of his condition.”(Granddaughter, P04)
“Knowing my mom’s brain damage can cause rudeness, I proactively manage potential conflict. I comfort her, explain her illness to others who may not understand, and apologize in advance on her behalf to foster understanding and prevent distress for everyone involved … Due to COVID-19 restrictions, I could not visit my mom. Our only way to connect was through an iPad, so I could see her, but not face-to-face.”(Son, P24)
4. Discussion
Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Centre for Health Protection of Department of Health. Situation of COVID-19 (23 January 2020 to 29 January 2023). 2023. Available online: https://www.chp.gov.hk/files/pdf/local_situation_covid19_en.pdf (accessed on 1 May 2025).
- Mueller, A.L.; McNamara, M.S.; Sinclair, D.A. Why does COVID-19 disproportionately affect older people? Aging 2020, 12, 9959. [Google Scholar] [CrossRef] [PubMed]
- Wimo, A.; Seeher, K.; Cataldi, R.; Cyhlarova, E.; Dielemann, J.L.; Frisell, O.; Guerchet, M.; Jönsson, L.; Malaha, A.K.; Nichols, E.; et al. The worldwide costs of dementia in 2019. Alzheimer’s Dement. 2023, 19, 2865–2873. [Google Scholar] [CrossRef] [PubMed]
- Seo, H.J.; Park, S.I.; Choi, M.J.; Choo, I.H.; Park, J.H. Resilience of family caregivers of people with dementia in South Korea: A scoping review. Int. J. Older People Nurs. 2024, 19, e12647. [Google Scholar] [CrossRef]
- Lindeza, P.; Rodrigues, M.; Costa, J.; Guerreiro, M.; Rosa, M.M. Impact of dementia on informal care: A systematic review of family caregivers’ perceptions. BMJ Support. Palliat. Care 2020, 14, e38–e49. [Google Scholar] [CrossRef]
- World Health Organization. Dementia. 2025. Available online: https://www.who.int/news-room/fact-sheets/detail/dementia (accessed on 1 May 2025).
- Alzheimer’s Disease International. Number of People with Dementia Worldwide. 2025. Available online: https://www.alzint.org/resource/numbers-of-people-with-dementia-worldwide/ (accessed on 1 May 2025).
- Leung, C.L.K.; Wei, W.I.; Li, K.K.; McNeil, E.B.; Tang, A.; Wong, S.Y.S.; Kwok, K.O. Revisiting vaccine hesitancy in residential care homes for the elderly for pandemic preparedness: A lesson from COVID-19. Vaccines 2023, 11, 1700. [Google Scholar] [CrossRef] [PubMed]
- Cheung, P.H.H.; Chan, C.P.; Jin, D.Y. Lessons learned from the fifth wave of COVID-19 in Hong Kong in early 2022. Emerg. Microbes Infect. 2022, 11, 1072–1078. [Google Scholar] [CrossRef]
- Hanlon, P.; Wightman, H.; Politis, M.; Kirkpatrick, S.; Jones, C.; Andrew, M.K.; Vetrano, D.L.; Dent, E.; Hoogendijk, E.O. The relationship between frailty and social vulnerability: A systematic review. Lancet Healthy Longev. 2024, 5, e214–e226. [Google Scholar] [CrossRef]
- Bífárìn, O.; Quinn, C.; Breen, L.; Wu, C.; Ke, M.; Yu, L.; Oyebode, J. Stressors and coping mechanisms of family care-givers of older relatives living with long-term conditions in mainland China: A scoping review of the evidence. Ageing Soc. 2023, 43, 952–989. [Google Scholar] [CrossRef]
- Cohen, G.; Russo, M.J.; Campos, J.A.; Allegri, R.F. Living with dementia: Increased level of caregiver stress in times of COVID-19. Int. Psychogeriatr. 2020, 32, 1377–1381. [Google Scholar] [CrossRef]
- Zmora, R.; Statz, T.L.; Birkeland, R.W.; McCarron, H.R.; Finlay, J.M.; Rosebush, C.E.; Gaugler, J.E. Transitioning to long-term care: Family caregiver experiences of dementia, communities, and counseling. J. Aging Health 2021, 33, 133–146. [Google Scholar] [CrossRef]
- Aledeh, M.; Adam, P.H. Caring for dementia caregivers in times of the COVID-19 crisis: A systematic review. Am. J. Nurs. Res. 2020, 8, 552–561. [Google Scholar] [CrossRef]
- Zhou, Y.; Ishado, E.; O’Hara, A.; Borson, S.; Sadak, T. Developing a unifying model of resilience in dementia caregiving: A scoping review and content analysis. J. Appl. Gerontol. 2021, 40, 1377–1388. [Google Scholar] [CrossRef] [PubMed]
- Palacio, G.C.; Krikorian, A.; Gómez-Romero, M.J.; Limonero, J.T. Resilience in caregivers: A systematic review. Am. J. Hosp. Palliat. Med. 2020, 37, 648–658. [Google Scholar] [CrossRef]
- McKenna, O.; Fakolade, A.; Cardwell, K.; Langlois, N.; Jiang, K.; Pilutti, L.A. Towards conceptual convergence: A systematic review of psychological resilience in family caregivers of persons living with chronic neurological conditions. Health Expect. 2022, 25, 4–37. [Google Scholar] [CrossRef]
- Kaye-Kauderer, H.; Feingold, J.H.; Feder, A.; Southwick, S.; Charney, D. Resilience in the age of COVID-19. BJPsych Adv. 2021, 27, 166–178. [Google Scholar] [CrossRef]
- Zhang, N.; Yang, S.; Jia, P. Cultivating resilience during the COVID-19 pandemic: A socioecological perspective. Annu. Rev. Psychol. 2022, 73, 575–598. [Google Scholar] [CrossRef]
- Gómez-Trinidad, M.N.; Chimpén-López, C.A.; Rodríguez-Santos, L.; Moral, M.A.; Rodríguez-Mansilla, J. Resilience, emotional intelligence, and occupational performance in family members who are the caretakers of patients with dementia in Spain: A cross-sectional, analytical, and descriptive study. J. Clin. Med. 2021, 10, 4262. [Google Scholar] [CrossRef]
- Cubero-Plazas, L.; Sancho-Cantus, D.; de la Rubia Ortí, J.E.; Prieto-Contreras, L.; Forero-Rincón, O.; Cunha-Pérez, C. Impact of family function on the quality of life and health perception of non-institutionalized dementia patients. J. Alzheimer’s Dis. 2023, 94, 963–975. [Google Scholar] [CrossRef]
- Kim, E.K.; Park, H. Factors associated with burden of family caregivers of home-dwelling elderly people with dementia: A systematic review and meta-analysis. Korean J. Adult Nurs. 2019, 31, 351–364. [Google Scholar] [CrossRef]
- Wang, L.; Zhou, Y.; Fang, X.; Qu, G. Care burden on family caregivers of patients with dementia and affecting factors in China: A systematic review. Front. Psychiatry 2022, 13, 1004552. [Google Scholar] [CrossRef]
- Wang, Y.X.; Cai, C.; Zhu, Y.X.; Shi, W.L.; Cheng, B.; Li, C.Y.; Shi, C.Q. Family burden and psychological distress among Chinese caregivers of elderly people with dementia: A moderated mediation model. BMC Nurs. 2024, 23, 723. [Google Scholar] [CrossRef] [PubMed]
- Arsenault-Lapierre, G.; Bui, T.X.; Le Berre, M.; Bergman, H.; Vedel, I. Rural and urban differences in quality of dementia care of persons with dementia and caregivers across all domains: A systematic review. BMC Health Serv. Res. 2023, 23, 102. [Google Scholar] [CrossRef]
- Cipolletta, S.; Morandini, B.; Tomaino, S.C.M. Caring for a person with dementia during the COVID-19 pandemic: A qualitative study with family care-givers. Ageing Soc. 2023, 43, 535–555. [Google Scholar] [CrossRef]
- Ma, K.P.K.; Saw, A. An international systematic review of dementia caregiving interventions for Chinese families. Int. J. Geriatr. Psychiatry 2020, 35, 1263–1284. [Google Scholar] [CrossRef] [PubMed]
- Tong, A.; Sainsbury, P.; Craig, J. Consolidated Criteria for Reporting Qualitative Research (COREQ): A 32-Item Checklist for Interviews and Focus Groups. Int. J. Qual. Health Care 2007, 19, 349–357. [Google Scholar] [CrossRef]
- MacLean, L.M.; Meyer, M.; Estable, A. Improving accuracy of transcripts in qualitative research. Qual. Health Res. 2004, 14, 113–123. [Google Scholar] [CrossRef]
- Poland, B.D. Transcription quality as an aspect of rigor in qualitative research. Qual. Inq. 1995, 1, 290–310. [Google Scholar] [CrossRef]
- Squires, V. Thematic Analysis. In Varieties of Qualitative Research Methods; Okoko, J.M., Tunison, S., Walker, K.D., Eds.; Springer Texts in Education; Springer: Cham, Switzerland, 2023. [Google Scholar] [CrossRef]
- Lincoln, Y.S.; Guba, E.G. But is it rigorous? Trustworthiness and authenticity in naturalistic evaluation. New Dir. Program Eval. 1986, 73–84. [Google Scholar] [CrossRef]
- Tsai, H.H.; Cheng, C.Y.; Weng, L.C.; Shieh, W.Y.; Liu, C.Y. Motivations for family members’ visits to nursing home residents with dementia in Taiwan: A qualitative study. J. Nurs. Scholarsh. 2021, 53, 87–95. [Google Scholar] [CrossRef]
- Tasseron-Dries, P.E.; Smaling, H.J.; Doncker, S.M.; Achterberg, W.P.; van der Steen, J.T. Family involvement in the Namaste care family program for dementia: A qualitative study on experiences of family, nursing home staff, and volunteers. Int. J. Nurs. Stud. 2021, 121, 103968. [Google Scholar] [CrossRef]
- Liu, H.Y.; Hsu, W.C.; Shyu, Y.I.L.; Wang, Y.N.; Huang, T.H.; Lin, Y.E.; Huang, C.H. Finding a balance in family caregiving for people with dementia: A correlational longitudinal study. J. Adv. Nurs. 2021, 77, 2278–2292. [Google Scholar] [CrossRef] [PubMed]
- Knight, B.; Keane, N.; Benea, D.; Stone, R. Values and the experience of family care-giving: Cultural values or shared family values? Ageing Soc. 2024, 44, 61–78. [Google Scholar] [CrossRef]
- Thompson, G.; Hack, T.; Rodger, K.; St. John, P.; Chochinov, H.; McClement, S. Clarifying the information and support needs of family caregivers of nursing home residents with advancing dementia. Dementia 2021, 20, 1250–1269. [Google Scholar] [CrossRef]
- Wu, C.C.; Tsai, H.H.; Huang, H.L.; Wang, Y.W.; Huang, C.H.; Liu, C.Y. Depression in nursing home residents and its correlation with meaning of family involvement and depression of family. Int. Psychogeriatr. 2023, 35, 67–75. [Google Scholar] [CrossRef]
- Smith, L.; Morton, D.; van Rooyen, D. Family dynamics in dementia care: A phenomenological exploration of the experiences of family caregivers of relatives with dementia. J. Psychiatr. Ment. Health Nurs. 2022, 29, 861–872. [Google Scholar] [CrossRef] [PubMed]
- Roberto, K.A.; Savla, J. Extended family caregivers for persons living with dementia. J. Fam. Nurs. 2022, 28, 396–407. [Google Scholar] [CrossRef]
- Van Corven, C.T.; Bielderman, A.; Lucassen, P.L.; Verbeek, H.; Lesman-Leegte, I.; Depla, M.F.; Gerritsen, D.L. Family caregivers’ perspectives on their interaction and relationship with people living with dementia in a nursing home: A qualitative study. BMC Geriatr. 2022, 22, 212. [Google Scholar] [CrossRef]
- Zhao, Y.; Lei, L.; Fang, S.; Zhi, S.; Song, D.; Gao, S.; Wu, Y.; Zhong, Q.; Zhang, Y.; Song, H.; et al. Characteristics of relatives with high expressed emotion and related factors: A study of relatives of people with dementia in China. BMC Psychol. 2024, 12, 715. [Google Scholar] [CrossRef]
- Barrado-Martín, Y.; Nair, P.; Anantapong, K.; Aker, N.; Moore, K.J.; Smith, C.H.; Rait, G.; Sampson, E.L.; Manthorpe, J.; Davies, N. Family caregivers’ and professionals’ experiences of supporting people living with dementia’s nutrition and hydration needs towards the end of life. Health Soc. Care Community 2022, 30, 307–318. [Google Scholar] [CrossRef]
- Mole, L.; Kent, B.; Abbott, R.; Hickson, M. Family carers’ experiences of nutritional care for people living with dementia at home: An interpretative phenomenological analysis. Dementia 2021, 20, 231–246. [Google Scholar] [CrossRef]
- Hennings, J.; Froggatt, K. The experiences of family caregivers of people with advanced dementia living in nursing homes, with a specific focus on spouses: A narrative literature review. Dementia 2019, 18, 303–322. [Google Scholar] [CrossRef] [PubMed]
- Bjørge, H.; Halvorsrud, L.; Goyal, A.R. Always on alert: How relatives of family members with dementia experience the transition from home to permanent nursing home placement. Nurs. Open 2023, 10, 6300–6308. [Google Scholar] [CrossRef] [PubMed]
- Rogers, A.H.; Epps, F.; Hendricksen, M.; Roach, A.; Akunor, H.S.; Lopez, R.P. Trust of nursing home staff caring for residents with advanced dementia: A qualitative descriptive study of family caregivers’ perspectives. Geriatr Nurs. 2021, 42, 1362–1366. [Google Scholar] [CrossRef]
- Boogaard, J.A.; Werner, P.; Zisberg, A.; van der Steen, J.T. Examining trust in health professionals among family caregivers of nursing home residents with advanced dementia. Geriatr. Gerontol. Int. 2017, 17, 2466–2471. [Google Scholar] [CrossRef]
- Midtbust, M.H.; Alnes, R.E.; Gjengedal, E.; Lykkeslet, E. Separation characterized by responsibility and guilt: Family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities. Dementia 2021, 2, 518–533. [Google Scholar] [CrossRef]
- Nash, W.A.; Harris, L.M.; Heller, K.E.; Mitchell, B.D. “We are saving their bodies and destroying their souls.”: Family caregivers’ experiences of formal care setting visitation restrictions during the COVID-19 pandemic. In The COVID-19 Pandemic and Older Adults; Routledge: Abingdon, UK, 2022; pp. 99–114. [Google Scholar]
- Garnett, A.; Pollock, H.; Floriancic, N.; Prentice, K.; Donelle, L.; Hand, C.; Oudshoorn, A.; Babenko-Mould, Y.; Forchuk, C. Social connectedness between family caregivers and older adults living in long-term care homes in the context of COVID-19. Can. J. Aging /Rev. Can. Vieil. 2024, 43, 33–44. [Google Scholar] [CrossRef] [PubMed]
- Wang, Q.; Xiao, X.; Zhang, J.; Jiang, D.; Wilson, A.; Qian, B.; Song, P.; Yang, Q. The experiences of East Asian dementia caregivers in filial culture: A systematic review and meta-analysis. Front. Psychiatry 2023, 14, 1173755. [Google Scholar] [CrossRef]
- Xiuxiang, Z.; Zhang, X.; Hockley, J. A qualitative study of family caregivers’ coping strategies of looking after people with dementia in China. J. Res. Nurs. 2020, 25, 636–649. [Google Scholar] [CrossRef]
- Lee, K.; Cassidy, J.; Zhao, J.; Mitchell, J. Understanding challenges and coping strategies experienced by Chinese American family caregivers of persons with dementia. J. Appl. Gerontol. 2023, 42, 919–927. [Google Scholar] [CrossRef]
- Yuan, Y.; Dube, C.E.; Xu, S.; Lim, E.; Qu, S.; McPhillips, E.; Lapane, K.L. Exploring the social and cultural aspects of Chinese family caregivers’ experience as they support loved ones with dementia transitioning into nursing homes: A qualitative study protocol. BMJ Open 2024, 14, e085731. [Google Scholar] [CrossRef]
- Bedford, O.; Yeh, K.H. The history and the future of the psychology of filial piety: Chinese norms to contextualized personality construct. Front. Psychol. 2019, 10, 100. [Google Scholar] [CrossRef] [PubMed]
- Bedford, O.; Yeh, K.H. The contribution of Chinese process thought to psychology as a global science: Filial piety as an example. Rev. Gen. Psychol. 2020, 24, 99–109. [Google Scholar] [CrossRef]
- Duangjina, T.; Hershberger, P.E.; Gruss, V.; Fritschi, C. Resilience in family caregivers of Asian older people with dementia: An integrative review. J. Adv. Nurs. 2025, 81, 156–170. [Google Scholar] [CrossRef] [PubMed]
- Li, F.; Qin, W.; Zhu, M.; Jia, J. Model-based projection of dementia prevalence in China and worldwide: 2020–2050. J. Alzheimer’s Dis. 2021, 82, 1823–1831. [Google Scholar] [CrossRef]
- Yin, Y.; Tam, H.L.; Quint, J.; Chen, M.; Ding, R.; Zhang, X. Epidemiology of dementia in China in 2010–2020: A systematic review and meta-analysis. Healthcare 2024, 12, 334. [Google Scholar] [CrossRef]
- Steenfeldt, V.Ø.; Aagerup, L.C.; Jacobsen, A.H.; Skjødt, U. Becoming a family caregiver to a person with dementia: A literature review on the needs of family caregivers. SAGE Open Nurs. 2021, 7, 23779608211029073. [Google Scholar] [CrossRef]
- Queluz, F.N.; Kervin, E.; Wozney, L.; Fancey, P.; McGrath, P.J.; Keefe, J. Understanding the needs of caregivers of persons with dementia: A scoping review. Int. Psychogeriatr. 2020, 32, 35–52. [Google Scholar] [CrossRef]
- Heymann, J.; Raub, A.; Waisath, W.; Earle, A.; Stek, P.; Sprague, A. Paid leave to meet the health needs of aging family members in 193 countries. J. Aging Soc. Policy 2024, 36, 508–531. [Google Scholar] [CrossRef]
- Teles, S.; Napolskij, M.S.; Paúl, C.; Ferreira, A.; Seeher, K. Training and support for caregivers of people with dementia: The process of culturally adapting the World Health Organization iSupport programme to Portugal. Dementia 2021, 20, 672–697. [Google Scholar] [CrossRef]
- Tekola, B.; Girma, F.; Kinfe, M.; Abdurahman, R.; Tesfaye, M.; Yenus, Z.; WHO CST Team; Salomone, E.; Pacione, L.; Fekadu, A.; et al. Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia. Autism 2020, 24, 51–63. [Google Scholar] [CrossRef]
- He, J.; Wang, J.; Zhong, H.; Guan, C. The effectiveness of multi-component interventions on the positive and negative aspects of well-being among informal caregivers of people with dementia: A systematic review and meta-analysis. Int. J. Environ. Res. Public Health 2022, 19, 6973. [Google Scholar] [CrossRef] [PubMed]
- Cheng, S.T.; Li, K.K.; Losada, A.; Zhang, F.; Au, A.; Thompson, L.W.; Gallagher-Thompson, D. The effectiveness of nonpharmacological interventions for informal dementia caregivers: An updated systematic review and meta-analysis. Psychol. Aging 2020, 35, 55–77. [Google Scholar] [CrossRef] [PubMed]
- Quinn, C.; Gamble, L.D.; Parker, S.; Martyr, A.; Collins, R.; Victor, C.; Dawson, E.; Hunt, A.; Pentecost, C.; Allan, L.; et al. Impact of COVID-19 on carers of people with dementia in the community: Findings from the British IDEAL cohort. Int. J. Geriatr. Psychiatry 2022, 37. [Google Scholar] [CrossRef] [PubMed]
- Tuijt, R.; Frost, R.; Wilcock, J.; Robinson, L.; Manthorpe, J.; Rait, G.; Walters, K. Life under lockdown and social restrictions-the experiences of people living with dementia and their carers during the COVID-19 pandemic in England. BMC Geriatr. 2021, 21, 301. [Google Scholar] [CrossRef]
- Zhao, W.; Wu, M.L.; Petsky, H.; Moyle, W. Family carers’ expectations regarding dementia care services and support in China: A qualitative study. Dementia 2022, 21, 2004–2019. [Google Scholar] [CrossRef]
No. | Probing Questions |
---|---|
1. | Could you share some of the reasons that bring you visit your family member here at the residential care home (RCH)? |
2. | Could you share what it was like for you when visiting the RCH throughout the COVID-19 pandemic? |
3. | When you think about the RCH, what aspects or qualities stand out to you most positively? Perhaps you could share a specific instance from the COVID-19 pandemic that highlighted this for you. |
4. | Could you describe what a typical visit with your family member at the RCH looks like? What sorts of activities or interactions do you usually have? Perhaps you could share a specific example of how a visit went during the COVID-19 pandemic. |
5. | Did they suffer from the disease themselves? |
6. | What were some of the main difficulties or problems you faced during your visits? Can you give an example of a challenge that arose during the COVID-19 pandemic period. |
7. | How do you feel when you think about your family member and his/her dementia? |
8. | Thinking about any challenges you faced during your visits, how did you manage those, and what do you think could improve the visit experience overall or prevent such difficulties? |
Mean (Min–Max) | n | (%) | ||
---|---|---|---|---|
Age | 50.4 (28–92) | |||
Gender | ||||
Male | 11 | (44) | ||
Female | 14 | (56) | ||
Education level | ||||
None | 1 | (4) | ||
Primary | 4 | (16) | ||
Secondary | 3 | (12) | ||
Tertiary | 17 | (68) | ||
Employment | ||||
Employed | 11 | (44) | ||
Self-employed | 2 | (8) | ||
Unemployed/Retired | 12 | (48) | ||
Marital status | ||||
Single | 7 | (28) | ||
Married | 16 | (64) | ||
Divorced | 2 | (8) | ||
Relationship to family member with dementia | ||||
Grandmother/Grandfather | 7 | (28) | ||
Mother/Father | 10 | (40) | ||
Wife/Husband | 7 | (28) | ||
Sister/Brother | 1 | (4) | ||
Frequency of visit | ||||
4–5 times/week | 8 | (32) | ||
6–7 times/week | 9 | (36) | ||
1–3 times/month | 8 | (32) | ||
Religious beliefs | ||||
Nil | 12 | (48) | ||
Catholic | 6 | (24) | ||
Christian | 7 | (28) | ||
Family member with dementia in RCH—Age | ||||
51–60 | 3 | (12) | ||
61–70 | 2 | (8) | ||
71–80 | 7 | (28) | ||
81–90 | 6 | (24) | ||
>91 | 7 | (28) | ||
Family member with dementia in RCH—Gender | ||||
Male | 8 | (32) | ||
Female | 17 | (68) |
Themes | Subthemes |
---|---|
Theme 1: Virtue of respect and filial piety | Affected by Confucian beliefs |
Mitigation or affliction | |
Theme 2: Family expectations and hopes | Support for nutritional deficits |
Support for physical deficits | |
Support for cognitive deficits | |
Theme 3: From red flags to resilience and rebuilding stronger relational bonds | Support for emotional deficits |
Resolving conflicts |
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content. |
© 2025 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Yip, A.; Yip, J.; Tsui, Z.; Yip, K.M.R. Unseen Strength: Dementia, the COVID-19 Pandemic, and the Resilient Hearts That Never Stopped Caring. COVID 2025, 5, 93. https://doi.org/10.3390/covid5060093
Yip A, Yip J, Tsui Z, Yip KMR. Unseen Strength: Dementia, the COVID-19 Pandemic, and the Resilient Hearts That Never Stopped Caring. COVID. 2025; 5(6):93. https://doi.org/10.3390/covid5060093
Chicago/Turabian StyleYip, Alice, Jeff Yip, Zoe Tsui, and Ka Man Rachel Yip. 2025. "Unseen Strength: Dementia, the COVID-19 Pandemic, and the Resilient Hearts That Never Stopped Caring" COVID 5, no. 6: 93. https://doi.org/10.3390/covid5060093
APA StyleYip, A., Yip, J., Tsui, Z., & Yip, K. M. R. (2025). Unseen Strength: Dementia, the COVID-19 Pandemic, and the Resilient Hearts That Never Stopped Caring. COVID, 5(6), 93. https://doi.org/10.3390/covid5060093