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How the progression of dementia in elderly patients affect the family relationships of informal carers in the UK


The purpose of this research is to analyze the effects of dementia on informal carers’ relationships with their loved ones. Understanding the demands placed on both the person with dementia and the person providing informal care is essential for meeting the needs of both parties. Many studies and institutions focus only on the needs of patients, rather than the needs of the informal carers. This study highlights the need and requirement of providing supplementary assistance to informal carers. The research analyzed and compared data from several sources in a systematic literature review to provide an answer to the question.

The findings indicated that in order to prevent strained relationships with their loved ones, carers need additional knowledge on how to manage the sickness and the stress brought on by the weight of the illness. We hypothesize that Assistive Technology might be useful for lowering healthcare costs by improving access to specialists in areas such as diagnosis, medication, and mental health treatment, as well as easing the burden on primary care physicians. Case managers may also keep track of patients and help family members all along the care pathway: they do this by collecting and sharing information with the different health professionals involved, in this specific instance the informal caregivers. In order to meet the needs of families dealing with dementia, further study is needed to determine whether certain teaching strategies for informal care providers could be optimal.  Get your nursing assignment help today.

Table of Contents

Chapter 1: Introduction 4

References 5

Chapter 1: Introduction


Dementia, as described by Duong et al. (2017), is a clinical illness characterized by gradual deterioration in cognitive abilities that eventually compromises an individual’s capacity to carry out daily tasks without assistance. Dementia makes people more reliant on others, both emotionally and physically, as pointed out by Cunningham et al. (2015). According to Gale et al. (2018), primary neurologic, medical, and neuropsychiatric disorders all contribute to the development of dementia. Neurodegenerative dementias like Alzheimer disease and Lewy body dementia are very frequent among the elderly. According to the latest data, there were around 850,000 persons living with dementia in the UK in 2019. It was 1 in every 14 adults over the age of 65 (Alzheimer society, 2020).


Alzheimer’s disease and dementia are similar in that they both cause a slow but steady decline in mental capacity. Dementia patients’ reliance on others for care grows as the disease progresses. As the frequency and intensity of symptoms rise, it becomes more difficult to go about everyday life and take part in social activities. Because of this, there may be instances when a person needs constant attention. Care may be required for a long time since the sickness itself might last for years (on average, seven) (Molsa et al., 1986).

Dementia rates are set to rise following the ageing of the world population (Zwaanswijk et al., 2013). However, the supply of medical experts is not likely to increase to cater for the needs of an ageing population. Dementia patients will, therefore, rely more and more on their informal carers which include relatives and friends. While a person with dementia is admitted to a long-term care facility, they will continue to get the same kind of care they had when they were living at home (Turcotte, 2013). When care is given regularly or for an extended length of time, the emotional and physical health of the carer may suffer (Turcotte, 2013). In particular, the length of time spent providing care before to a loved one’s admittance into a nursing home was the most significant predictor of how much less of a burden a loved one would feel thereafter. Caregiver sadness and patient behavioral change ratings were the most important factors in determining when and whether a person with dementia will be institutionalized (Yeh et al., 2002). Caregiving may seem more burdensome since it takes longer and there are more people who need it.

The stress of caring for someone with dementia is compounded by the fact that informal caregivers must adjust to the person’s condition and behavioral changes. Dementia is a degenerative disease with an uncertain course, which presents significant difficulties for informal carers. Caregivers reported a variety of losses at various levels of the family and utilized a wide range of strategies to deal with grief and keep the family unit functioning (Coelho et al., 2007). The majority of carers report receiving little to no informal assistance, are unfamiliar with official services, and struggle to anticipate their loved one’s care requirements. Caregiver reports of inadequate preparation to offer care. Therefore, it is crucial to provide assistance to informal carers so as to improve their quality of life and forestall severe caregiver stress. ‘Alzheimer meeting locations for patients and families’ are only one example of the many professional support services offered in the Netherlands and elsewhere in Western Europe for those affected by Alzheimer’s disease (Bos, 2008). Despite this, many informal carers’ support requirements go unfulfilled because they either cannot access the resources they need or believe that the professional care they get is not adequately tailored to their specific situation (Parveen, Peltier & Oyebode, 2017).

Role of informal carers in the care of older people:

Negative outcomes are often linked to informal caring. Caregiving has no harmful consequences at first [Metzelthin et al., 2017]. However, the burden on caregivers grows as a result of a number of factors [Metzelthin et al., 2017]. These include the care recipient’s increased morbidities and disability levels, the length of time the caregiver spends providing care, the number of tasks the caregiver must perform, the type of care provided (in-home versus institutional), and the caregiver’s gender and age. Organizational factors (e.g., received assistance), caregiver autonomy, and caregiving needs all have a role in the quality of life of informal carers [Farina et al., 2017]. In British, the average period spent caring for an older relative is considered to be somewhere between two and eight years [Emrich et al., 2012]. It might be a very lengthy period with plenty of unexpected difficulties. It is possible that organizational and structural factors, rather than emotional motivations like a feeling of obligation, play a role in the choice to offer informal care. For this reason, it is important for decision-makers to have insight into the preferences, wants, and desires of informal carers in order to design care structures that are conducive to the lifestyles of all parties and that seamlessly integrate care into the homes of (possible) caregivers.

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individuals may be more likely to care for a care-dependent person informally if there are organizational and structural changes that make day-to-day caregiving easier and if there are incentives. Outpatient care structures could be improved by making care arrangements fit the wants and needs of unpaid caregivers about how care for the elderly is set up. Due to population shifts, there are now more people in need of nursing care due to their advanced age and weak condition. This deterioration in health is followed by an all-encompassing process of adjusting to new circumstances on the part of the elderly and their loved ones. A preventative strategy to care planning is required to satisfy the demand for the altered service use and the load limit or breaking point for carers [Klinidtworth et al., 2017]. However, understanding the motivations of informal carers is crucial for taking their load limit and prospective capabilities into consideration. As a result, we conducted a literature review to learn more about the wants and needs of informal caregivers. This study explores in depth how the British people feels about caring for the elderly and their expected willingness to do so. [De Jong et al., 2020].

Being a caretaker in an informal setting may be quite taxing. Many people become caregivers without adequately preparing for the responsibilities involved, and they may not have many other options. This might be due to a moral or legal need to give care, a lack of formal alternatives, or a lack of knowledge about available options. Caregivers also incur substantial additional expenses due to the intangible nature of informal caregiving. These include the health effects of the physical and psychological load endured and the potential costs of missed wages, jobs, and pension benefits. Caregivers who do not get sufficient assistance may experience financial hardship, health problems, and feelings of loneliness as a result of providing unpaid care. More than a thousand family caregivers from around Europe were surveyed by COFACE Families Europe in 2017. The degree to which informal caregivers are impacted by these difficulties varies according to factors such as the kind of care regime in which they participate, the caregiver’s life stage when they take on this role, and the caregiver’s access to resources and decision-making power.

Research question as shown at



Caregiver perspectives on the benefits and drawbacks of their work, as well as the factors that contribute to a favourable or bad experience in their interactions with patients’ families, will be included in a comprehensive study.

Role conflict theory in care giving

Stephens and Franks’s (1999) conflicting demands hypothesis and Goode’s (1960) scarcity model of role theory is both based on the idea that individuals have scarce time and energy to do all of their duties. Role conflict occurs when distinct positions have conflicting demands, while role strain occurs when people feel burdened, exhausted, or tense as a consequence of juggling all of their responsibilities. Role conflict arises, according to scarcity theory, when the responsibilities of one role (such as job) interfere with those of another (such as caring for an elderly loved one). A woman who is both a full-time employee and a caregiver for an elderly family member has a lot on her plate. As a result, she may experience role conflict, in which she must choose between her numerous duties, and role overload, in which she is unable to fulfill all of her tasks. The focus of this work is on the relationship between CIW and WIC and role strain, in this instance, caregiving burden and job stress, even though both role overload and role conflict contribute to role strain (Cooper et al., 2001).. Role tension, or role strain, was identified by MacEwen and Barling (1991) as a result of juggling paid employment outside the house with the responsibility of caring for young children. Because of the unpredictable nature of having to care for an elderly loved one, the fact that these responsibilities often arise out of the blue and without warning, that they often grow in complexity and scope over time, and that they are often triggered by unexpected events like a health crisis, working with and caring for the elderly can be a very demanding experience. Consistent with the hypothesis that role conflict causes role strain This research adds significantly to the existing body of knowledge in three key ways as suggested at nursing expert writers.

The findings of the study by Gordon et al. (2012) indicate evidence for two separate variables, WIC and CIW, each with its own set of antecedents and outcomes, lending credence to a bidirectional perspective of work–caregiving conflict. Overall, the findings indicate that older working women face stress due to the dual obligations of caring and employment. The demands of the workplace are a significant factor in determining whether or not caring interferes with work (CIW) or the caregiving burden (WIC) or the work load (WB). However, the effects of caring obligations are confined to the domestic sphere (Gordon et al., 2012). Together, these pressures cause older working women a great deal of stress and tension between their careers and their caring responsibilities. These findings contribute to the research on the challenges that older women face in caregiving and the workforce.

Workplace pressures have far-reaching impacts (Glasgow & Zoucha, 2011) that affect not just job role strain but also caregiving role strain. When caring obligations expand, older women may see their work as more fundamental to their identity, which may have a negative effect on other areas of their lives and lead to difficult mental and behavioral shifts. Findings from a 2012 study by Gordon et al. demonstrate the value of social support in alleviating stress for older women who are also caregivers in and out of the workplace. Given the negative correlations between instrumental support for caregivers and load, and between emotional support at work and stress, it is clear that social support is essential for mitigating these undesirable results. There may be some overlap between the degree of help employees receive at work and how much work they really have to complete, as shown by Gordon et al. (2012)’s concept of work-interfering-with-caregiving (WIC). For caregivers, it is tremendously beneficial to have aid in both the professional and family realms. See for more.

Caregiver stress is strongly correlated with the length of caring and the degree of patient dependence. Care load is also based on the patient’s reliance degree, which is influenced by their cognitive and behavioral impairments. The trajectory of a particular disease’s treatment and the social support requirements of both the patient and the caregiver ought to be  taken into account when designing interventions to alleviate burden. Changing gender norms so that males take on more responsibility around the home might ease the heavy load women carry.

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