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Dementia Care, Challenges and Recommendations for Social Workers: Literature Review

Dementia Care

Dementia is a mental disorder that affects the cognitive function of the patient. It leads to the deterioration of memory and physical, emotional and behavioural control of the people affected. It sets in during the late growth stages of the people affected, increasing the difficulty of taking care of the people (Raz et al., 2016). It has therefore been categorized as one of the largest disorders affecting the elderly globally. According to a study by Wulff et al. (2020), around 50 million people are affected by dementia worldwide.

Moreover, a majority of these people receive care in informal settings. This is a kind of setting where the care is given by people close to the patient. People like the parents, friends, children or even neighbours are often tasked with ensuring the well-being of disabled people. For reasons ranging from personal and patient-related factors, these people choose to retain the patient under their care even when there are formal settings that could be used to provide the required care. The responsibility does not come as a walk in the park. This is because there have been several instances of self-reported symptoms of depression and anxiety among these informal caregivers. The authors conducted a comparative study between Sweden and Italy. They concluded that informal caregivers in Italy reported more severe symptoms of depression than those in Sweden. The levels of depression and anxiety can be linked to several factors connected to the caregiving process.

A study by Lethin et al. (2020) aimed to establish the factors that lead to caregiver burden. The study focused on caregivers in informal care, covering caregivers caring for people living with dementia at home. The researchers interviewed all these participants with a sample space of 1223 participants. The respondents were from eight European countries, providing a proper representation of the countries and a good image that can be used in making the conclusions. The researchers performed a multivariate regression analysis to come out with clear findings. Some of the factors that were found to pose huge burdens to the caregiver include extensive levels of care required by the patient, reduced cognition from the patient, reduced quality of life for the caregivers and that of the patient, increased neuropsychiatric symptoms, and depression from both the patient and the caregiver.

Moreover, the caregiver’s negative experience and perception of the caregiving process also increased the reported cases. The research did not end there, as they even sought to establish the factors that can be used to determine the deterioration of the care given due to the increased burden. Factors include the reduction in the caregiver’s quality of life, severe neuropsychiatric symptoms from people with dementia and the caregiver’s perception of the quality of the care. These findings were provided as factors that could be used to develop improved structures in the caregiving process.

When it comes to the choice of the factors determining the type of care services a patient receives, Moholt et al. (2018) research provides very clear insights into the matter. The research recognizes family members’ impact in providing care to people with dementia. They play a huge role, with the biggest percentage of people under care being under their roofs or in their homes. However, this is not a decision made from nowhere. As the researchers reveal, factors from the caregiver, the people with dementia and other external factors affect the decision. Based on the factors provided by the caregivers, the researchers sought to understand the issue of respite care for both home-based measures and out-of-home efforts. The research unveils that the use of home-based services for this particular group of people was influenced by factors like advancement in the age of people with dementia, persons that live alone, those living in urban centres and those that can manage to live alone despite having the condition. The disorder’s severity determines the person’s ability to live alone. Other factors used as determinants from the caregiver’s side include permanent employment, relationship with the family member, being of higher age, educational levels of the caregiver and the person’s ethnicity, especially when there were no blood ties between the people. Despite the depth of this study, several weaknesses affected the decisions. First, the research was only conducted among people that were known to the doctors, leaving the chances of those that were not yet known to them.

Challenges in Caregiving

There is a very large pool of literature regarding the challenges faced by the caregivers and factors that may affect the delivery of proper care to people with dementia. First, as Lethin et al. (2020) state, is the caregiver’s burden. This is a big challenge affecting the quality of care for persons with dementia. This is because, at some point, the caregiver might become overwhelmed. This becomes a disadvantage to both the person with dementia and the caregiver.

A study by Stephan et al. (2018) unveils another challenge many researchers do not consider a challenge. This is the problem of late access to formal care services. In most informal care settings, especially the homes, formal care is not a serious consideration. As a result, the researchers conducted a deep analysis of the issue to understand the factors preventing them from getting formal care early. The researchers took a multi-stakeholder approach to understand the problem better. They took perspectives of the people with dementia, the informal caregivers, and health and social care professionals. The study involved 261 participants. This includes 114 professionals, 96 informal caregivers and 51 patients. The research unveils that several factors play a role in the process. The first factor is related to the individuals involved. This looks at both the caregiver and the person with dementia. What they want plays a role in determining the kind of care they give patients. Other factors include the system and the ease of access and other overarching factors like the availability of formal caregivers and the cost. The research, however, does not provide a clear solution to this challenge.

People with dementia are also prone to a huge challenges in disasters. Owing to their alienation in some instances, they often find themselves in positions of difficulty and are often affected by disasters and epidemics when they arise. Research by Wang et al. (2020) explored the challenges that persons with dementia went through during the Covid-19 pandemic. Being old, the people were more vulnerable. Moreover, they had very little access to information concerning their safety and the measures they were supposed to take. Even when they sometimes came across the information, it could hardly stick in their memories due to the disorder. Therefore, they are among the most affected people. To reduce the risk of exposure, there were strict measures all over the world to ensure that they were was minimal contact between the external environment and that of the persons with dementia. For those that were in nursing homes, it became very difficult for them due to alienation from family members that often visited them. The risk increased for those that used home-based care since the caregivers had to interact with the outside world and return home. The study, therefore, successfully explores the challenges that both the patients faced in their homes and the challenges faced by the caregivers.

Stall et al. (2019) continue the wide pool of literature on caregivers’ challenges and people living with dementia. According to the research, caregivers often become distressed due to the huge responsibility they are tasked with. This distress is translated to the well-being of the care recipients in the community. The research acknowledges the central role of informal caregiving in delivering proper care to people with dementia in the community. The study is similar to that of Lethin et al. (2019). However, this study is more specific to the distress faced by informal caregivers and its implications on the quality of care they give people with dementia. The study is a very positive contribution to the research as it provides clear evidence backed by a proper analysis of the relationship between the two factors. Further, it provides clear recommendations on what should be done to improve the situation.


Existing studies have also come up with several recommendations for improvement of the care given to people with dementia. The research by Stall et al. (2019) starts the list by recommending that the social workers and authorities responsible for the well-being of people with dementia should consider the implications for the well-being of the caregivers. This is because the caregivers have proven to play a central role in delivering the support these people require.

Moyle also studies how technology can help to better the future of dementia care (2019). Technology has come in handy in several instances to help various professionals deliver better care. This is with the acknowledgement of the prevalence of dementia and how much it affects people. The research insists that unless proper measures are put in place, the caregiving process will yield very few results by the end of the day. The research, therefore, proses the use of technology that augments the existing care. The application of the right technological resources will help in the creation of more autonomy for people with dementia. This is because their well-being can be remotely monitored without tying the caregiver to the care recipient. Although these technologies are already in place, the research clarifies that very little has been done regarding their adoption. Therefore, the research recommends its adoption to help in better caregiving.

Research by Li et al. (2020) reveals that a huge gap exists regarding the health literacy, social support and care ability of most informal dementia caregivers. This has affected the quality of care they give to the patients. The difference in the quality of care translates to low quality of life for the people. Therefore, the research recommends the conducting of health literacy among caregivers. There is also a dire need for support from society and the authorities responsible for reducing the risks and challenges resulting from using little health literacy. The study was conducted over a wide period to allow room for the recording and providing the right recommendations for improving the caregiving process. Therefore, the recommendation by the research to provide the appropriate health education to the caregivers has been provided after a proper study. The paper provides suggestions, advising the family members, social workers, and other stakeholders to provide the required levels of support to the caregivers. This way, the people will get a better life.

To improve the quality of life for people with dementia and their caregivers, as Lethin et al. (2020) suggest, there is a need for adequate service systems and interventions to improve the care. The social workers need to take proper actions to ensure clear measures and the right levels of awareness to help those helping with caregiving in informal settings. This will lead to an overall improvement in the quality of services and life for persons with dementia.


Lethin, C., Leino-Kilpi, H., Bleijlevens, M. H., Stephan, A., Martin, M. S., Nilsson, K., … & Karlsson, S. (2020). Predicting caregiver burden in informal caregivers caring for persons with dementia living at home–A follow-up cohort study. Dementia19(3), 640-660.

Li, Y., Hu, L., Shen, Y., Xue, H., Hou, P., & Liu, Y. (2020). Health literacy, social support, and care ability for caregivers of dementia patients: structural equation modelling. Geriatric Nursing41(5), 600-607.

Moholt, J. M., Friborg, O., Blix, B. H., & Henriksen, N. (2020). Factors affecting home-based and out-of-home respite care services: A survey of family caregivers for older persons with dementia in Northern Norway. Dementia19(5), 1712-1731.

Moyle, W. (2019). The promise of technology in the future of dementia care. Nature Reviews Neurology15(6), 353-359.

Raz L, Knoefel J, Bhaskar K. (2016). The neuropathology and cerebrovascular mechanisms of dementia. J Cereb Blood Flow Metab;36(1):172–86.

Stall, N. M., Kim, S. J., Hardacre, K. A., Shah, P. S., Straus, S. E., Bronskill, S. E., … & Rochon, P. A. (2019). Association of informal caregiver distress with health outcomes of community‐dwelling dementia care recipients: a systematic review. Journal of the American Geriatrics Society67(3), 609-617.

Stall, N. M., Kim, S. J., Hardacre, K. A., Shah, P. S., Straus, S. E., Bronskill, S. E., … & Rochon, P. A. (2019). Association of informal caregiver distress with health outcomes of community‐dwelling dementia care recipients: a systematic review. Journal of the American Geriatrics Society67(3), 609-617.

Stephan, A., Bieber, A., Hopper, L., Joyce, R., Irving, K., Zanetti, O., … & Meyer, G. (2018). Barriers and facilitators to access and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. BMC geriatrics18(1), 1-16.

Wang, H., Li, T., Barbarino, P., Gauthier, S., Brodaty, H., Molinuevo, J. L., … & Yu, X. (2020). Dementia care during COVID-19. The Lancet395(10231), 1190-1191.

Wulff, J., Fänge, A. M., Lethin, C., & Chiatti, C. (2020). Self-reported symptoms of depression and anxiety among informal caregivers of persons with dementia: a cross-sectional comparative study between Sweden and Italy. BMC Health Services Research20(1), 1-15.


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