This paper addresses the topic of families who deal with dementia. In particular, the paper examines the role of family members who become the caregivers. The rationale for this topic is that dementia is a tragic, difficult disease for the individual affected as well as for the families and friends of these individuals. It is imperative, therefore, that families be given the tools to assist them in dealing with the care of the family member who has dementia. The slow, degenerative nature of the disease leaves many families scrambling to cope, as a family member, or multiple family members, ultimately become the primary caregiver(s) for the diagnosed individual. The stress of this role is often combined with the caregiver’s regular job, and sometimes balancing the dementia patient’s own needs against the caregiver’s personal needs, becomes a struggle. It is therefore important that in-hospital nurses and community health nurses work in tandem with the caregiver to ensure that both the dementia patient’s and the caregiver’s needs are met. This paper examines the topic of families who deal with dementia in the following manner. There will be an overview and background providing key aspects of dementia related to family health. This will be followed by, the examination of new recommendations or approaches to dementia care, incorporating a critical analysis of the new recommendations in light of research literature about dementia and the caregivers for dementia patients. The paper was researched by reading peer-reviewed journals about the topic: the search terms used were the following: ‘dementia’; ‘families care dementia’; ‘treatment dementia’; ‘caregivers dementia’; ‘psychological effects dementia families’; and, ‘dementia nursing practice’.
Overview & Background
A clinical diagnosis of dementia is identified and defined by the medical acknowledgement of at least 6 months in which the patient’s loss of memory has a negative impact on the day-to-day activities of the individual in question. As well, there should be a marked decline in cognitive abilities, loss of emotional control and/or motivation, and there should be a notable challenge and marked change with social interactions (Staff & Walesby, 2016, p. 51). There is also the possibility of a concurrent diagnosis of depression, but the patient’s circumstances need to be evaluated as depression by itself can present some of these symptoms. Within the family and among friends, however, the realization that there is something wrong is a slow process. It is generally not until a crisis of some kind occurs that the family will seek a diagnosis and they will find that dementia is determined. This latter diagnosis is difficult as there is a “…lack of universally agreed criteria” (Staff & Walesby, 2016, p. 51) in defining dementia. In other words, dementia is highly complex, with multiple symptoms that must be considered by the physician when making a diagnosis. This is because there are many different types of dementia, for example, vascular dementia; dementia brought on by Alzheimer’s disease; and, as well, there is age related dementia. Dimentia can run in families and so there are biologial predisposition risk factors that also need to be considered by the physician.
Management of dementia is generally within the community, within an acute care hospital, a long-term care facility, or in a palliative care setting, depending on the severity of the diagnosis. Within the community, there is combined care management between the family, sometimes friends, community services, and the healthcare community. Community care is the model most often seen, as there is a move away, in healthcare practice, from the institutionalization of individuals with dementia. If a patient is fortunate enough to be diagnosed early, preparations can be made by the family based on the type of dementia, regarding type of support, short- and long-term medication treatment, the issues legal matters and financial matters can be proactively dealt with, and resources and advocacy can be sourced and obtained by the family (Staff & Walesby, 2016, p. 52; Harrison Denning, 2016, 41-42). As well, there are also issues to consider, such as when the individual is in the most advanced stages of the disease and gastrstomy feeding and, possibly, palliative care, needs to be considered and prioor arrangements made.
Within a hospital care setting, patients with dementia are generally of two types. The first, dementia patients who may be in the early stages and not realize this, being brought in, for example, for falls, fine motor issues, or to ascertain the reasons for noticable recurring memory lapses. The second type of dementia patient would be patients in late stage dementia, where, for example, there are sensory issues, incontinence, and impaired mobility (Staff & Walesby, 2016, p. 52). Healthcare professionals and, nurses in particular, deal with dementia patients at all stages of the disease. The focus in hospital care settings is to understand the diagnosed type of dementia of the patient, provide the in-hospital or community-based support, engage with the care team regarding the patient’s care plan, and to note the desired decision-making provisions in the future for patient. For patients who are in hospital, care involves the minimilization of sensory impairments, reduction or avoidance of environmental triggers, provision of medications, as prescribed, treatment of pain, meeting nutritional requirments, dealing with issues of constipation and incontenence, and, avoiding dehydration (Staff & Walesby, 2016, p. 52).
In considering care of dementia patients at or in the hospital, there are some gaps in care that might occur. Research by Tootab, et al., (2013), address the causes of crisis in dementia cases and the appropriate interventions that can be taken by the both the caregiver and the healthcare staff. An examination of crises and interventions reveals gaps and opportunities for practice improvement. Patients who were still at the vocalization stage and not advanced in the progress of the disease, note that in a crisis they look towards support from family and friends; having a mobile phone near at hand and available; and, having home adaptations to assist them. In a crisis caregivers and healthcare professions both looked to caregiver training and education; care plans; well coordinated care; assistive technologies; and, also, home adaptions. The healthcare staff additionally identified more intensive interventions such as home respite and extended hours services. The causes of crises identified by the patient were risks and hazzards in the home and physical accidents that could possibly have a long-term impact. Caregivers identified causes of crises as career stress for those who worked and are also caregivers at the same time; and, their own mental health. Healthcare staff identified crises to be service organization and coordination, which could lead to issues related to their own stress. All three parties, the patient, the caregiver, and healthcare staff, identified specialist home care as a must in order to reduce the impact of crises (Tootab, et al., 2013, 329-333; 335).
New Recommendation & Critical Analysis
Given that there are a significant number of dementia patients being looked after by caregivers at home and, therefore, in the community, the latter point, the need for specialist home care, represents a gap in care that community nurses can address. Community nurses can help with the training of caregivers so that the skill level of these caregivers increases. Identification of risks and hazards in the home is another issue that can be dealt with if the caregiver also receives specialized health and safety training for the home. With improved skills, the caregiver will feel more confident in handling crises that may occur. Community nurses and in-hospital nurses will feel more confident of the ability of the caregiver’s role in multi-disciplinary care teams. Multi-disciplinary care is becoming more the norm in hospital care settings. Funding cuts to healthcare means that care resources are balanced over a wider span of control and, as such, it is important that in-hospital nurses, community nurses and caregivers identify mutual areas of concern, and be able to access appropriate training to strengthen care gaps and care delivery.
Another study, that of Ducharme, et al., (2014), identifies additional gaps in the needs of caregivers looking after dementia patientsthat wold be in addition to specialist home care. These are the following: the need for additional information regarding specialist help and financial resources; caregivers’ own personal need to be valued and to be able to engage in activities suited to their abilities (Ducharme, et al., 2014; 12); and, stress reduction and more personal time (Ducharme, et al., 2014; 6, 10-12; 15). In other words, caregivers wanted to be recognized and valued as individuals in addition to their role as caregivers. This suggests that the caregiving role can overwhelm a caregiver’s life and personality, and that there is limited recognition of these facts.
A review of the literature reviewed above, suggests that the gaps in care need to be prioritized and balanced against the resources and funds available. Dedicated caregiver training that involves the assessment of the psychological, physical and caregiving skills needs of the caregiver, plus the needs of community and in-hospital nursing staff, seems a first step towards providing overall improved care for dementia patients. This, of course, would need to be considered in conjunction with the number of caregivers in a particular catchment area, such as a regional health delivery boundary; for example, the Local Health Integration Networks (LHIN) in Ontario. This would facilitate the use of existing facilities and resources within the LHIN and would realize financial efficiencies. In such a support system, the community nurse would be the link between the family, the caregiver, and the in-hospital nurse within a multi-disciplinary care team.
Ducharme, et al., research contain qualitative elements that include the comments of some caregivers that are worth noting, as these comments are pertinent to the premise of this paper. The following are three of the comments: “… You get help but it’s rationed…” (Ducharme, et al., 2014, 12); “…not enough is done to publicize the services offered…” (Ducharme, et al., 2014, 11); and, “…when I come home after dealing with problems all day at work, all I do is deal with more problems…” (Ducharme, et al., 2014, 11). The frustration expressed in these words are but a small sampling of the issues that family caregivers must face almost every single day. These comments, therefore, are good representation of some of the multiple overlapping concerns that families and caregivers face in looking after family members with dementia in the home. As most dementia patients eventually end their battle with the disease in hospital, in long-term care units, or in palliative care units, consideration should also be given towards including grief management in the skills training that caregivers receive. Of particular note is the Chronic Grief Management Intervention (CGMI) program, which provides information about dementia, addresses improving “…skills in communication, conflict resolution, and chronic grief management” (Paun, et al., 2015, 6). Developing good communication is key to being able to work with someone with deminishing mental capacityh. The CGMI is geared more towards caregivers of Alzheimer’s disease patients, but could be adapted to meet the needs of other caregivers of patients with other types of dementia. There is such a sense of guilt associated with the frustration of looking after a dementia patient, as well as the grief of losing the person while they are still yet alive. If such training is incorporated into overall caregiver skills training from an early stage, caregivers could develop better personal coping mechanisms.
To conclude, the prevalence of dementia diseases is expected to increase over the next few decades. Research indicates that close to 15.4 million individuals, in the US alone, most of whom are family members, provide care for dementia patients (Paun, et al., 2015, 7. As such, it is imperative that nursing practice engages with caregivers in an effort to improve caregiver skills so that the gaps in dementia patient care can be addressed. In this manner, families and caregivers can feel more confident in their ability to look after family members with dementia. Care of dementia patients usually begins at home and a review of the literature reveals that caregivers and healthcare researchers have identified several gaps in caregivers’ ability to care for dementia patients. One of the most striking is the need for specialized home care. This gap, as well as gaps in communication skills, among others, can be met if there is an assessment by the healthcare community, of local caregiver needs. Armed with this knowledge, training resources could be put in place to enable training of caregivers that could allow them to provide more specialized care. This with the support of the community nurse, who can act as a go-between with the family and a multi-disciplinary care team.
Ducharme, F., Kergoat, M., Coulombe, R., Levesque, L., Antoine, P., & Pasquier, F. (2014). Unmet support needs of early-onset dementia family caregivers: a mixed-design study. BMC Nursing, 13(49), 1-18.
Harrison Denning, K. (2016, August 19). Advance care planning in dementia. Nursing Standard, 29(51), 41-46.
Paun, O., Farran, C., Fogg, L., Loukissa, L., Thomas, P., & Hoyem, R. (2015). A Chronic Grief Intervention for Dementia Family Caregivers in Long-Term Care. Western Journal of Nursing Research, 37(1), 6-27.
Staff, J., & Walesby, K. (2016). Diagnosis and management of dementia in older people. Medicine in Older Adults, 45(1), 51-54.
Tootab, S., Hoea, J., Ledgerdb, R., Burnellc, K., Devined, M., & Orrella, M. (2013). Causes of crises and appropriate interventions: The views of people with dementia, carers and healthcare professionals. Aging & Mental Health, 17(3), 328–335.