Caring for people with dementia

As populations age, caring for people with dementia has become more common. Elderly caregiving may consist of formal care and informal care. Formal care involves the services of community and medical partners, while informal care involves the support of family, friends, and local communities, but more often from spouses, adult children and other relatives. In most mild to medium cases of dementia, the caregiver is a family member, usually a spouse or adult child. Over time more professional care in the form of nursing and other supportive care may be required, whether at home or in a long term care facility. There is evidence that case management can improve care for individuals with dementia and the experience of their caregivers.^[1] Furthermore, case management may reduce overall cost and institutional care in the medium term.^[1]

Family caregivers[]

The role of family caregivers has become more prevalent; care in the familiar surroundings of home may delay onset of some symptoms and postpone or eliminate the need for more professional and costly levels of care. Home-based care may entail tremendous economic, emotional costs as well. Family caregivers often give up time from work and forego pay in order to spend an average of 47 hours per week with an affected loved one, who frequently cannot be left alone. In a 2006 survey of patients with long-term care insurance, the direct and indirect costs of caring for an Alzheimer's disease patient averaged $77,500 per year in the United States.^[2] Caregivers are themselves subject to increased incidence of depression, anxiety, and, in some cases, physical health issues.^[3][4][5]

Research shows that African Americans face a more significant burden in Alzheimer’s care management and will face more negative life changes and health outcomes due to providing care.^[6] African Americans are twice as likely to be diagnosed with dementia than other ethnic groups,^[6] and caregivers often materialize as secondary patients due to the severe impact of caregiving on health and well-being.^[7] Additionally, according to the Alzheimer’s Association and NAC/AARP, 60% of Alzheimer’s disease and dementia caregivers are typically female and are 55 or older.^[8]  This data emphasizes that African Americans are disproportionately affected by Alzheimer’s disease and other dementias; therefore, understanding caregivers’ subjective stress is urgent.

Schulz et al. concluded in a US study that "the transition to institutional care is particularly difficult for spouses, almost half of whom visit the patient daily and continue to provide help with physical care during their visits. Clinical interventions that better prepare the caregiver for a placement transition and treat their depression and anxiety following placement may be of great benefit to these individuals."^[9] Thommessen et al. found in a Norwegian study that the most common stressors reported were "disorganization of household routines, difficulties with going away for holidays, restrictions on social life, and the disturbances of sleep..." and that this was common to carers for dementia, stroke and Parkinson's disease patients.^[10] In a Japanese study, Hirono et al. assessed that "the patients' functional and neuropsychiatric impairments were the main patient factors which increased the caregiver's burden."^[11] An Italian study by Marvardi et al. found "that patients' behavioral disturbances and disability were the major predictors of the time-dependent burden; the psychophysical burden was explained mainly by caregiver anxiety and depression."^[12]

Caregivers may experience anticipatory grief and ambiguous loss,^[13][14][15] and research shows that African American caregivers are less likely to seek help for grief and depression than their Caucasian counterparts.^[6] Furthermore, physiological changes such as increased cortisol levels, the body’s primary stress hormone, contribute to impaired cognitive function,^[16] perpetuating the problem of Alzheimer’s disease within the African American community since stress is a known causal.

While family caregivers often care for patients with dementia at home, they also provide a helpful function within nursing or residential aged care facilities. Findings from a 2021 systematic review found caregivers of these patients in nursing homes with dementia do not have sufficient tools or clinical guidance for helping to manage multiple interventions, such as behavioral and psychological symptoms of dementia (BPSD) and medication use.^[17]

Respite or day care[]

Caring for someone with dementia is accompanied by many emotional and physical challenges.^[18] Respite care is designed to give rest or relief to caregivers. A 2014 study did not report any benefits or detrimental effects from the use of these interventions.^[18] However, these results may be due to the lack of high quality studies in this field.^[18]

Now from a systematic review from 2016 there is information that respite services provided to families with a relative with dementia does give positive support and help reduce stress. It has also been found that those who use respite services provided by a nursing home or other facility have the possibility of the family member with dementia being moved into one of these places sooner than those who do not use this service,^[19] while early utilization of in-home help services may delay institutionalization.^[20]

Respite care benefits caregivers in ways such as providing time for relaxation, for socialization with others and for taking care of personal tasks. Caregivers need time for themselves, so they do not experience burnout.^[21] See also Caregiver stress and Memory and aging.

Respite care can take place in many different settings depending on the needs of those involved. It can be done in adult daycare facilities or at nursing homes that provide respite services. Many times another family member can also come into the home.^[21]

Environmental design[]

A 2010 review summarizes what is known about best practices for safe and stimulating environments for dementia.^[22] Architects in designs for aging in place can consider the relationship of the built environment to the functioning and well-being of seniors.

The environment that a person with dementia lives in is very important. It should be conducive to relaxation, stimulating, and engaging. The environment in which those with dementia live should foster their ability to be a participant and not just an observer in their life and include opportunities for independence. Their environment should allow them to keep their identity. Including things that are personal to them and that serve as reminders of their identity are important and meaningful. This personal environment should also be a place where if needed they can have privacy. The areas should also be well lit with minimal items on the ground to reduce risks of falling or injury.^[23]

The environment where those with dementia eat their meals should be inviting and foster conversation and socialization.^[23] Items designed specifically to help individuals with dementia can also be helpful, such as industrial designer Sha Yao's tableware that both has the colorful and unique design that stimulate people with dementia and has other features that address cognitive, motor, and physical impairments that often arise.^[24][25][26]

Communicating[]

Caring for someone with dementia is especially challenging due to the fact that dementia patients soon lose the ability to speak or otherwise communicate and seem unable to understand what's said to them.^[27] Care approaches known variously as patient-centered care or comfort-centered care attempt to address the difficulty in communication between caregiver and patient. These terms are used in reference to all patient populations, not just dementia patients.^[28]

To communicate with dementia patients who have lost their ability to communicate in traditional ways, nontraditional forms of communication are used. Paying attention to eye movements, facial expressions and body movements can help caregivers understand them a little better. In the study by Ellis and Astell it was found that as researchers imitated the sounds and body language of the dementia patients, they engaged even more with the researcher. As each person is affected by dementia differently, a unique form of communication may need to be established. Even though they may be nonverbal that does not always conclude they no longer wish to participate in the world around them.^[29]

Memory strategies[]

Some studies have demonstrated emotional memory enhancement in Alzheimer's patients suggesting that emotional memory enhancement might be used in the daily management of Alzheimer's patients.^{[30][31][32][33]} One study found that objects are recalled significantly better in Alzheimer's patients if they were presented as birthday presents to AD patients.^[34]

Assistive technology[]

A 2017 Cochrane Review highlighted the current lack of high-quality evidence to determine whether assistive technology effectively supports people with dementia to manage memory issues.^[35] Thus, it is not presently sure whether or not assistive technology is beneficial for memory problems.

Psychological and psychosocial therapies[]

A 2018 Cochrane Review found that offering personally tailored activity sessions to people with dementia in long-term care homes may help manage challenging behaviour.^[36] No evidence supported the idea that activities were better if they matched the individual interests of people. The findings are based on low-certainty evidence from eight studies.

Nursing[]

In the acute care setting a fair number of individuals diagnosed with dementia suffer from hip fractures. For that reason, nurses are in high demand to care for this population.^[37] When taking care of the elderly who are cognitively impaired it is challenging to assess if one is experiencing pain. Pain is commonly defined as a subjective feeling that is best understood by the patient. Because of this, nurses tend to rely on verbal statements from patients to detect whether one is hurting.^[38] Due to diminished verbal skills in this population it can increase the risk of inadequately assessing ones' needs, including if they are in pain. Research has shown that patients not being able to express themselves is the number one barrier when it comes to caring for the elderly.

As the population continues to age, the numbers of patients in hospital settings with dementia will most likely increase. To prevent the elderly with dementia from receiving inadequate recognition of pain nurses should use common sense to aid in assessments.^[37] Interpreting body language has been shown effective in relieving discomfort. Another way to improve perception of pain is getting to know the patient better through family members’ eyes. Obtaining further information about the patient from family members helps make the connection to normal behaviors.^[38] Although some of these strategies are beneficial there still is a lack of research focused on dementia patients in the acute care setting. As a result, this puts an increased risk of strain on nurses and patients.

See also[]

Wikiversity has learning resources about Caregiving and dementia

• Clinical Geropsychology
• Carers rights movement
• Direct support professional
• Personal Care Assistant

References[]

Further reading[]