Literature review on the unique challenges that are involved with caregiving of a loved one with dementia.
Date: December 7th 2022
Dementia is an umbrella term for “any disorder where significant decline from one's previous level of cognition causes interference in occupational, domestic, or social functioning” (Gale, Acar & Daffner, 2018). There are two broad categories of dementia; neurodegenerative and non-neurodegenerative. Neurodegenerative dementia’s are irreversible and usually diagnosed in seniors over the age of 65, the most common neurodegenerative dementias are Alzheimers, dementia with Lewy Bodies, vascular and frontotemporal dementias (Gale, Acar & Daffner, 2018; Holmes & Amin, 2020). Non-neurodegenerative dementias are potentially reversible and can be caused by a variety of factors such as a severe B1 deficiency which can result in Wernicke encephalopathy, exposure to toxic chemicals, pollutants or heavy metals can also cause dementia syndrome (Gale, Acar & Daffner, 2018). For the purpose of this literature review, I will be focusing on neurodegenerative dementias and the impact that these progressive and terminal diseases have on caregivers. These caregiving responsibilities often fall on family members or friends of the individuals with dementia and that’s who will be the focus of this literature review, the unpaid loved ones who provide frequent care. The Alzheimer’s Society of Canada (2022) has found that in 2020 there were 569,600 Canadians living with dementia and they predict that by 2030 that number will be 955,900. The Alzheimer’s Society of Canada also references that one in every five Canadians have cared for someone with dementia (Alzheimer’s Society of Canada, 2022). The unique challenges that are involved with caregiving for a loved one with dementia has gained more recognition in recent years, and therefore there is a great deal of research that has been done recently. The literature that was gathered for this literature review largely focuses on research that has been done in the last 10 years and seeing as dementia doesn’t discriminate across countries, ethnicities, income or otherwise, the literature was gathered from around the world. Recently the impacts of caregiving for a loved one with dementia has been recognized as having specific risks which can negatively impact the caregiver’s overall health and wellbeing, the main themes that the research suggests are a risk of anticipatory or complicated grief, ambiguous loss and social isolation.
An understanding of grief requires “an awareness of the diverse forms and experience of loss and grief” and “recognising grief as a reaction to any kind of loss” (Goldsworthy, 2005). Grief can be especially complicated for the caregivers of loved ones with dementia. Seeing as neurodegenerative dementia’s are progressive and terminal diseases, the caregiver must adapt to different stages of the dementia with the knowledge that their loved one will continue to decline and eventually die from the illness. Neurodegenerative dementia’s can progress somewhat differently depending on the individual and the type of disease, however the average life expectancy after the symptom onset of these dementias are 8-12 years with exceptions of up to 20 years (Gale, Acar & Daffner, 2018; Pérez-González et al, 2021). This progressive and terminal diagnosis is understandably distressing to the patient and their loved ones. Anticipatory grief is a common experience for caregivers and can be defined as the emotional response to the impending death of a loved one, as well as the anticipation of the disease progressing and an expectation of loss in the quality of life (Chan et al, 2013; Pérez-González et al, 2021; Gavin et al, 2021). This type of grief can be extended to the expected serial losses of the caregiver, such as the loss of their companion, freedom and control (Chan et al, 2013). Due to the ongoing losses that the caregiver is experiencing, the process of grieving is often disrupted and prolonged, as a caregiver explained; “prolonged grieving is difficult, where you’re grieving for so long, but you haven’t really gotten the chance to really grieve” (Glass, 2016). After the loved one has died, caregivers can experience normal or complicated grief, complicated grief is when a caregiver has difficulty processing their grief and this grieving does not fade over time and impacts their day to day functioning. The death of a loved one with dementia can also bring up feelings of relief which can be surprising and distressing for the caregiver and the caregiver often grieves the loss of their role as a caregiver (Nathanson & Rogers 2021).
Loss is closely tied to grief, as grief is the emotional response to a significant loss. Nathanson & Rogers (2021) highlight that “caregiving for people with dementia results in nearly double the amount of losses as caregiving for those with a disease other than dementia”. The stages of dementia are particularly challenging as dementia is a disease of the brain, one caregiver reported how they “slowly watch[ed] the deterioration and disintegration of someone once familiar” (Nathanson & Rogers 2021). Different dementias have different symptoms however, there are symptoms that are common across all neurodegenerative dementias such as neuropsychiatric symptoms, depression, apathy, changes in personality as well as agitation and aggression (Holmes & Amin, 2020). In addition, the person suffering from dementia often experiences memory and word finding difficulties which results in challenges with communication and decreased independence and mobility, which can make meaningful engagements difficult. The experience of witnessing this kind of a disease progression and losing pieces of your loved one is referred to as ‘ambiguous loss’ (Nathanson & Rogers 2021;Pérez-González et al, 2021). In other words, “these losses are called “ambiguous” because they are not always recognized or named, and, thus, they are not always allowed to progress through a natural grief cycle” (Nathanson & Rogers 2021). Another layer of ambiguous loss is that “the person is perceived as physically present but psychologically absent” (Pérez-González et al, 2021). Ambiguous losses can make grieving more difficult as the losses are not always clear or concrete and cultural grieving rituals often don’t include grieving for ambiguous loss which often leaves caregivers feeling like they don’t know how to grieve correctly (Nathanson & Rogers 2021).
Social isolation can be defined as “a state in which the individual lacks a sense of belonging socially, lacks engagement with others, has a minimal number of social contacts and they are deficient in fulfilling and quality relationships” (Lien-Gieschen, 1993). Caregivers of loved ones with dementia are at risk of social isolation and often become more isolated as the disease progresses (Davies et al, 2019; Kotwal et al, 2022; Lee et al, 2022). Lee et al (2022) categorized the disease progression into two categories that affect caregiver isolation: “symptom-related social isolation and disease progression-related social isolation”. Symptom-related social isolation includes caregiver distress over behavioural symptoms in public and concerns about stigma which result in the caregiver engaging in social activities less frequently. In addition, symptom-related social isolation can include family and friends engaging with the individual who has dementia less as the disease progresses. Disease progression-related social isolation refers to the increased amount of care that is required as the individual with dementia becomes more dependent on their caregiver, which results in the caregiver having less time to socialize (Davies et al, 2019; Lee et al, 2022). Financial strain can increase the risk of social isolation for caregivers as well. In addition, social isolation can be exacerbated when loved ones are caring for individuals with dementia as the individual with dementia is often the spouse or parent of the caregiver who may have been a major source of socialization and support for the caregiver. Socially isolated caregivers often report feelings of guilt in trying to balance meeting their own needs and their loved one’s needs (Lee et al, 2022) as well as high levels of stress and burden (Davies et al, 2019).
Application to Practice
Grief, loss and social isolation can have a significant impact on a caregiver’s overall health and quality of life, recognizing this is a first step to supporting caregivers. Social workers are in a favourable position to support caregivers as social workers often work closely and build relationships with the caregivers of individuals with dementia. This is especially true as the disease progresses and the dementia patient has more interactions with the healthcare system. Viewing the caregiver's experience through a grief and loss lens can be a helpful way to frame what the caregiver is going through and highlights how grief and loss can be experienced with or without death. In addition, having an understanding of the specific types of grief and loss that are prevalent, namely anticipatory and complicated grief and ambiguous loss and providing the opportunity for education around these experiences can be validating for caregivers to put a name to how they are feeling. If caregivers are curious, it can also be beneficial to offer education around dementia and manage expectations of what the caregiver can expect surrounding disease progression in their loved one. Applying the social determinants of health (SDOH) theory when working with caregivers can also be helpful. The SDOH are non-medical factors that affect a person’s health, they include factors such as income, education, employment, food security, social inclusion and access to healthcare. The SDOH theory is supported by a qualitative study done by Oliveira et al (2020) who discovered that the “quality of life of older family carers can be enhanced by having more time away from caregiving, accessing health and social services that are dementia friendly and by having economic support”. In other words, social workers can support caregivers by assessing the caregivers SDOH with a specific focus on exploring respite or long term care options, dementia friendly healthcare and social supports and providing economic support when necessary and available. The stigma surrounding dementia increases the risk of social isolation in caregivers, this stigma or perceived stigma can also make it more difficult for caregivers to socialize with friends who do not have similar caregiving experiences (Oliveira et al, 2020; Lee et al, 2022). Providing opportunities for caregivers to socialize with other caregivers or more formal support such as volunteers with dementia caregiving experience can be a useful tool in combating social isolation (Oliveira et al, 2020; Lee et al, 2022). Lastly, these applications for social work practice can act as a guide for how to support caregivers but it is important to recognize that everyone’s caregiving experience will look different, it is essential to meet caregivers where they are at and listen to their specific needs.
Neurodegenerative dementias can be extremely challenging for loved ones who take on caregiving responsibilities. These types of dementias are terminal illnesses which typically progress over the course of 8-10 years with increasing dependence on the caregiver. During this significant timeframe, caregivers watch their loved ones change and become progressively more unwell. For best practice, social workers who work with the caregivers of patients with dementia can educate themselves on the specific forms of grief, loss and isolation that these caregivers are at risk of. When social workers understand the needs of these caregivers, they can provide appropriate supports to increase their overall health and wellbeing.
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