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Dementia caregiving

Topic: Medicine

 From HandWiki - Reading time: 17 min
Short description: Form of caregiving

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. In most mild-to-medium cases of dementia, the caregiver is a spouse or an adult child. Over a period of time, more professional care in the form of nursing and other supportive care may be required medically, whether at home or in a long-term care facility. There is evidence to show that case management can improve care for individuals with dementia and the experience of their caregivers.[1] Furthermore, case management may reduce overall costs and institutional care in the medium term.[1] Millions of people living in the United States take care of a friend or family member with Alzheimer’s disease or a related dementia.[2]

Family caregivers

The role of family caregivers is becoming increasingly important; care in the familiar surroundings of home may delay the onset of some symptoms and postpone or eliminate the need for more professional and costly levels of care. However, home-based care may entail tremendous economic and emotional costs. 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, especially if they 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.[3]

Caregivers themselves are subject to an increased incidence of depression, anxiety, and, in some cases, physical health issues.[4][5][6] According to UK-based research, almost two out of three caregivers of those with dementia feel lonely. Most of the caregivers in the study were family members or friends.[7][8]

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.[9] African Americans are twice as likely to be diagnosed with dementia as other ethnic groups,[9] and caregivers often materialize as secondary patients due to the severe impact of caregiving on their health and well-being.[10] 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.[11] This data emphasizes that African Americans are disproportionately affected by Alzheimer’s disease and other forms of dementia.

In addition, the Hispanic population tends to experience a higher prevalence of caregiver burden. Hispanic/Latino family caregiving can differ significantly from other populations for various reasons. The majority of Hispanic/Latino family caregivers are women in their 40s who provide care for a parent-in-law or other older individuals in the household. They are less inclined to use professional caregiving services compared to other populations, even though their caregiving situations are often highly intensive.[6] According to a study, 63% of Hispanic/Latino caregivers reported their situations as high-burden, whereas 51% of non-Hispanic/Latino caregivers were facing similarly challenging circumstances.[10] Furthermore, a substantial number of Hispanic/Latino caregivers revealed limited support, placing them at a higher risk of experiencing burnout and distress.[8] Additionally, existing studies lack a tailored and focused approach to the needs of Hispanic/Latino caregivers.[11]

According to a US study "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."[12] 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 caregivers for dementia, stroke, and Parkinson's disease patients.[13] In a Japanese study, Hirono et al. assessed that the patients' functional and neuropsychiatric impairments were the main patient factors that increased the caregiver's burden."[14] Activities are important for the dementia patient because they keep their cognitive functioning. The caregiver should aid them in their activities but should not do it for them.[15] 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."[16]

Caregivers may experience anticipatory grief and ambiguous loss,[17][18][19] and research shows that African American caregivers are less likely to seek help for grief and depression than their Caucasian counterparts.[9] Furthermore, physiological changes such as increased cortisol levels, the body’s primary stress hormone, contribute to impaired cognitive function,[20] perpetuating the problem of Alzheimer’s disease within the African American community since stress is a known causal factor.

While family caregivers often care for patients with dementia at home, they also provide a helpful function within nursing or residential aged care facilities. Caregivers of these patients in nursing homes with dementia usually 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.[21] Nurses should provide information to the caregiver on how to take care of the dementia patient, so the caregiver does not neglect them.[22]

Respite or day care

Caring for someone with dementia is accompanied by many emotional and physical challenges. Respite care is designed to give rest or relief to caregivers and can take place in many different settings, depending on the needs of those involved. Respite services are offered at adult daycare facilities, nursing homes, or in-home.[23][24] There is a lack of evidence regarding the potential benefits or drawbacks of these interventions.[24]

Respite services provided to family members or friends caring for someone with dementia have positive effects such as stress reduction, increased time for relaxation, socialization, and focusing on personal tasks.[23] Respite services provided by a nursing home (or other similar facility) might increase the likelihood of the patient being transferred into an institution,[25] while early utilization of in-home help services can delay institutionalization.[26]

Environmental design

Architects in designs for aging in place can consider the relationship of the built environment to the functioning and well-being of seniors and create safe and stimulating environments for dementia.[27]

The environment that a person with dementia lives in is very important. Nurses should help provide a healthy environment for people with dementia. A negative, frustrated atmosphere from the nurses could lead to emotional neglect for the patients.[28] Nursing home managers do not understand how to take care of their dementia patients either, which could lead to a chaotic and hostile environment.[28] The environment should be conducive to relaxation, stimulating, and engaging. This can result in to both the nurses and the residents being less stressed. Nurses who work in a calm environment have decreased stress levels.[28] The environment in which those with dementia live should foster their ability to be participants and not just observers in their lives 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 is 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 the risk of falling or injury.[29]

The environment where those with dementia eat their meals should be inviting and foster conversation and socialization.[29] Items designed specifically to help individuals with dementia can also be helpful, such as industrial designer Sha Yao's tableware, which has both a colorful and unique design that stimulates people with dementia and other features that address cognitive, motor, and physical impairments that often arise.[30][31][32]

Things to do for people with dementia would be:[2]

  • Try to keep a routine, such as bathing, dressing, and eating, at the same time each day.
  • Help the person write down to-do lists, appointments, and events in a notebook or calendar.
  • Plan activities that the person enjoys and try to do them at the same time each day.
  • Consider a system or reminders for helping those who must take medications regularly.
  • When dressing or bathing, allow the person to do as much as possible.
  • Buy loose-fitting, comfortable, easy-to-use clothing, such as clothes with elastic waistbands, fabric fasteners, or large zipper pulls, instead of shoelaces, buttons, or buckles.
  • Use a sturdy shower chair to support a person who is unsteady and to prevent falls. You can buy shower chairs at drug stores and medical supply stores.
  • Be gentle and respectful. Tell the person what you are going to do, step by step, while you help them bathe or get dressed.
  • Serve meals in a consistent, familiar place, and give the person enough time to eat.

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.[33] Since dementia patients have trouble communicating their needs, this can be frustrating for the nurse. Nurses may have a hard time making relationships with their dementia patients because of the communication barrier. How the dementia patient feels is based on their social interactions, and they may feel neglected because of this barrier.[34] Nurses feel pain and helplessness when caring for a dementia patient.[28] 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.[35]

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. As each person is affected by dementia differently, a unique form of communication may need to be established. Nurses must use therapeutic communication while talking to patients. Therapeutic lying is a tool that nurses use to reassure patients that they are okay, and it's used in situations that would not harm the patient in any way.[36] Even though they may be nonverbal, that does not always mean they no longer wish to participate in the world around them.[37]

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.[38][39][40][41] One study found that objects are recalled significantly better in Alzheimer's patients if they are presented as birthday presents.[42]

Assistive technology

There is a lack of high-quality evidence to determine whether assistive technology effectively supports people with dementia to manage memory issues. Thus, it is not presently certain whether or not assistive technology is beneficial for memory problems.[43]

Psychological and psychosocial therapies

Main page: Medicine:Psychological therapies for dementia

Offering personally tailored activity sessions to people with dementia in long-term care homes may help manage challenging behavior.[44] No evidence supports the idea that activities were better if they match the individual interests of people. At the same time, a program showed that simple measures like talking to people about their interests can improve the quality of life for care home residents living with dementia. The program showed that such simple measures reduced residents' agitation and depression. They also needed fewer GP visits and hospital admissions, which also meant that the program was cost-saving.[45][46]

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.[47] When taking care of the elderly who are cognitively impaired, it is challenging to assess if one is experiencing pain. Missed nursing care is common when taking care of patients with dementia. Some nurses may prioritize other patients based on the stage of their dementia and their age. Missed care could lead to complications such as falls, infections, and incontinence.[48] 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.[49] Due to diminished verbal skills in this population, it can increase the risk of inadequately assessing one's 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 number 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.[47] Interpreting body language has been shown to be effective in relieving discomfort. Another way to improve perceptions of pain is to get 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.[49] Although some of these pain-relieving strategies are beneficial, there is still a lack of research focused on dementia patients in the acute care setting. Unfortunately, many nurses are not taught how to take care of patients with dementia. There are many programs that nurses go through that are provided by their facilities, but a little less than half of nurses do not feel comfortable actually using that training on their patients.[50] As a result, this puts an increased risk of strain on nurses and patients.

In general, however, the unfamiliar environment and routine practices of the acute care setting can be particularly challenging for people living with dementia. The absence of family and familiar surroundings, on top of the physical issue leading to the admission, heightens anxieties, confusion, and distress. Challenges in communication not only impact effective pain medication but also affect hydration, nutrition, and all aspects of physical and emotional care. While these challenges have long been recognized, they remain an ongoing issue[51] and have been further impacted by the COVID‑19 pandemic.[52] A person-centered care approach helps alleviate some of the unfamiliar stress of being in an acute care environment[53] and can also benefit those caring for people with dementia in this setting.[54] Implementing best practices in dementia care needs a hospital-wide approach. Increases in workforce capacity, physical environments that support familiarization, social interaction and activities, inclusive caregiver policies, and cultures of sharing knowledge have all shown promise in improving dementia care in the acute-care setting.[55][56]

Incontinence care

People with dementia are more likely to have problems with incontinence; they are three times more likely to have urinary and four times more likely to have fecal incontinence compared to people of similar ages.[57][58] This can have a profound impact on the dignity and quality of life of people with dementia and their caregivers.[57][59]

There is a general lack of understanding and stigma around incontinence.[60] Professionals also lack knowledge and training when it comes to incontinence in people with dementia.[57][61] Poorly managed incontinence also has a severe negative impact physically, psychologically, economically, and socially on people with dementia living at home and their informal caregivers.[57][61]

Guidelines suggest that treatment should always be preferred to containment, as pads and catheterization can be uncomfortable and negatively affect the person's dignity.[57] However, the continence problems of people with dementia are different than those of those without,[61] and the care strategy should take their and their caregivers' different perspectives into account.[62] There are guidelines for the continence care needs of people with complex health conditions, such as the Continence Care Framework.[63]

At home

A research program looked at how to improve care for people with dementia living at home. They identified priorities for action: the importance of early clinical assessment (rather than using pads); promoting continence through a balanced diet, exercise, and hand hygiene; encouraging and helping toilet use; and a sensitive management of incontinence to secure the person's dignity.[64][65]

In care homes

Among people with dementia living in care homes, the rates of fecal incontinence are between 30% and 50%.[66] This generally occurs alongside urinary incontinence, but around 30% of people in care homes have only urinary incontinence.[57][67] According to research in the UK, continence care should be individualized with the aim of promoting personal dignity. New measures should take into account the preferences and personal history of the affected person. Appropriate diet and mobility can help, and prompts to go to the toilet should be preferred over using pads. To support and encourage toilet use, staff need practical training and an understanding of how dementia affects continence.[66][65]

In hospitals

In a hospital context, the care of continence is often poor.[57][68] This can lead to worse clinical outcomes for people with dementia, a higher risk of infection, and the development of urinary and fecal incontinence.[69] After a clinical assessment, a personalized continence plan should be created, which includes identifying reversible causes and contributing factors. Continence problems in people with dementia are at the same time communication challenges. Staff need to be sensitive to the affected people's specific verbal and non-verbal cues, as they might have difficulties expressing their needs around continence. The language used should respect dignity and shouldn't cause embarrassment.[69] An ethnographic study in the UK pointed out the existence of "pad culture", which means that the main care strategy was the use of continence pads even in cases where people were continent. The main reasons for this strategy were fears about safety and falls, which kept people in their beds and did not support independence. This mode of caring often leads to undignified situations and the use of demeaning language.[70][65]

See also

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

References

  1. ↑ 1.0 1.1 "Case management approaches to home support for people with dementia". The Cochrane Database of Systematic Reviews 1 (1): CD008345. January 2015. doi:10.1002/14651858.CD008345.pub2. PMID 25560977. 
  2. ↑ 2.0 2.1 "Tips for Caregivers and Families of People With Dementia | National Institute on Aging" (in en). http://www.nia.nih.gov/life-with-dementia/tips-caregivers. 
  3. ↑ [|permanent dead link|dead link}}]MetLife Mature Market Institute (August 2006). "The MetLife Study of Alzheimer's Disease: The Caregiving Experience". http://www.metlife.com/WPSAssets/14050063731156260663V1FAlzheimerCaregivingExperience.pdf. 
  4. ↑ "Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes". The Gerontologist 35 (6): 771–791. December 1995. doi:10.1093/geront/35.6.771. PMID 8557205. 
  5. ↑ "A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia". International Psychogeriatrics 19 (2): 175–195. April 2007. doi:10.1017/S1041610206004297. PMID 17005068. 
  6. ↑ 6.0 6.1 "Specific effects of caring for a spouse with dementia: differences in depressive symptoms between caregiver and non-caregiver spouses". International Psychogeriatrics 20 (3): 508–520. June 2008. doi:10.1017/S1041610207006278. PMID 17937825. 
  7. ↑ "Most people caring for relatives with dementia experience loneliness" (in en). NIHR Evidence. 2020-07-22. doi:10.3310/alert_40575. https://evidence.nihr.ac.uk/alert/most-people-caring-for-relatives-with-dementia-experience-loneliness/. 
  8. ↑ 8.0 8.1 "The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme". Aging & Mental Health 25 (7): 1232–1238. July 2021. doi:10.1080/13607863.2020.1753014. PMID 32306759. 
  9. ↑ 9.0 9.1 9.2 "Experiences and Learning Needs of African American Family Dementia Caregivers". American Journal of Alzheimer's Disease and Other Dementias 31 (6): 492–501. September 2016. doi:10.1177/1533317516628518. PMID 26953236. 
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  30. ↑ "Fun, Colorful Tableware Designed For Alzheimer's Patients" (in en-US). 2015-08-19. https://www.fastcompany.com/3050048/fun-colorful-tableware-designed-for-alzheimers-patients. 
  31. ↑ "Highlights from Designed in California" (in en-US). https://www.sfmoma.org/read/highlights-designed-ca/. 
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  46. ↑ Ballard, Clive; Orrell, Martin; Moniz-Cook, Esme; Woods, Robert; Whitaker, Rhiannon; Corbett, Anne; Aarsland, Dag; Murray, Joanna et al. (July 2020). "Improving mental health and reducing antipsychotic use in people with dementia in care homes: the WHELD research programme including two RCTs". Programme Grants for Applied Research 8 (6): 1–98. doi:10.3310/pgfar08060. PMID 32721145. 
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  48. ↑ "Implementation of a training program to increase knowledge, improve attitudes and reduce nursing care omissions towards patients with dementia in hospital settings: a mixed-method study protocol". BMJ Open 9 (7): e030459. July 2019. doi:10.1136/bmjopen-2019-030459. PMID 31326938. 
  49. ↑ 49.0 49.1 "Pain relief at the end of life: nurses' experiences regarding end-of-life pain relief in patients with dementia". Pain Management Nursing 15 (1): 315–323. March 2014. doi:10.1016/j.pmn.2012.10.005. PMID 23453467. 
  50. ↑ "The barriers and facilitators to implementing dementia education and training in health and social care services: a mixed-methods study". BMC Health Services Research 20 (1): 512. June 2020. doi:10.1186/s12913-020-05382-4. PMID 32503536. 
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  55. ↑ "Can person-centred care for people living with dementia be delivered in the acute care setting?". Age and Ageing 50 (4): 1077–1080. June 2021. doi:10.1093/ageing/afab065. PMID 33890625. 
  56. ↑ "Commitment to the care of people with dementia in general hospitals (SPACE principles).". Royal College of Nursing. 2011. https://dementiapartnerships.com/wp-content/uploads/sites/2/rcnhospitalcare.pdf. 
  57. ↑ 57.0 57.1 57.2 57.3 57.4 57.5 57.6 "Continence, dementia, and care that preserves dignity". NIHR Evidence. 21 June 2022. doi:10.3310/nihrevidence_51255. https://evidence.nihr.ac.uk/themedreview/continence-dementia-and-care-that-preserves-dignity/. 
  58. ↑ "First diagnosis and management of incontinence in older people with and without dementia in primary care: a cohort study using The Health Improvement Network primary care database". PLOS Medicine 10 (8): e1001505. August 2013. doi:10.1371/journal.pmed.1001505. PMID 24015113. 
  59. ↑ "A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment". Age and Ageing 51 (1): afab221. January 2022. doi:10.1093/ageing/afab221. PMID 34888621. 
  60. ↑ "My bladder and bowel own my life." A collaborative workshop addressing the need for continence research.. Age UK. 2018. https://gutscharity.org.uk/wp-content/uploads/2018/08/Continence-needs-report-C402-August-2018.pdf. 
  61. ↑ 61.0 61.1 61.2 "Problems faced by people living at home with dementia and incontinence: causes, consequences and potential solutions". Age and Ageing 50 (3): 944–954. May 2021. doi:10.1093/ageing/afaa262. PMID 33320926. 
  62. ↑ "A taboo within a stigma? a qualitative study of managing incontinence with people with dementia living at home". BMC Geriatrics 11 (1): 75. November 2011. doi:10.1186/1471-2318-11-75. PMID 22081876. 
  63. ↑ "Reframing continence care in care-dependence". Geriatric Nursing 38 (6): 520–526. 23 April 2017. doi:10.1016/j.gerinurse.2017.03.014. PMID 28442175. 
  64. ↑ "Meeting the needs of older people living at home with dementia who have problems with continence". Quality in Ageing and Older Adults 18 (4): 246–253. 2017-01-01. doi:10.1108/QAOA-06-2017-0020. ISSN 1471-7794. https://doi.org/10.1108/QAOA-06-2017-0020. 
  65. ↑ 65.0 65.1 65.2 "Continence, dementia, and care that preserves dignity". NIHR Evidence (National Institute for Health and Care Research). 21 June 2022. doi:10.3310/nihrevidence_51255. https://evidence.nihr.ac.uk/collection/continence-dementia-and-care-that-preserves-dignity/. 
  66. ↑ 66.0 66.1 "Managing Faecal INcontinence in people with advanced dementia resident in Care Homes (FINCH) study: a realist synthesis of the evidence". Health Technology Assessment 21 (42): 1–220. August 2017. doi:10.3310/hta21420. PMID 28805188. 
  67. ↑ "Supporting people living with dementia and faecal incontinence". British Journal of Community Nursing 22 (3): 110–114. March 2017. doi:10.12968/bjcn.2017.22.3.110. PMID 28252330. http://openaccess.sgul.ac.uk/110998/1/Drennan-V-37760-AAM.pdf. 
  68. ↑ "'We tend to get pad happy': a qualitative study of health practitioners' perspectives on the quality of continence care for older people in hospital". BMJ Open Quality 10 (2): e001380. April 2021. doi:10.1136/bmjoq-2021-001380. PMID 33837091. 
  69. ↑ 69.0 69.1 "Understanding how to facilitate continence for people with dementia in acute hospital settings: a mixed methods systematic review and thematic synthesis". Systematic Reviews 10 (1): 199. July 2021. doi:10.1186/s13643-021-01743-0. PMID 34229762. 
  70. ↑ "Understanding approaches to continence care for people living with dementia in acute hospital settings: an ethnographic study". Health and Social Care Delivery Research 10 (14): 1–142. June 2022. doi:10.3310/QUVV2680. PMID 35737814. 

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