Dementia caregiving

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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]

Contents

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]

Caregiver Burden & Respite Care

Caring for someone with dementia can be accompanied by many emotional and physical challenges which can lead to Caregiver burden. Caregiver burden refers to the physical, emotional, social, and financial challenges experienced by individuals who provide care for someone with Alzheimer's disease or other forms of dementia.

Caregivers often experience a range of emotions, including stress, anxiety, depression, guilt, and grief. Witnessing the decline of a loved one's cognitive and functional abilities can be emotionally distressing and overwhelming.Providing care for someone with Alzheimer's can be physically demanding, especially as the disease progresses and the individual may require assistance with activities of daily living such as bathing, dressing, toileting, and feeding. Caregivers may experience fatigue, sleep disturbances, and physical strain from lifting or assisting their loved one. The cost of caregiving can be substantial, including expenses for medical care, medications, in-home care services, assisted living facilities, and other related costs. Caregivers may need to reduce their work hours or leave their jobs entirely to provide care, leading to loss of income and financial strain. Caregiving responsibilities can limit caregivers' ability to engage in social activities, maintain relationships, and pursue personal interests. Social isolation and loneliness are common among caregivers, which can further exacerbate feelings of stress and depression. Many caregivers lack adequate support from family members, friends, healthcare providers, and community resources. Feeling unsupported or misunderstood can compound the challenges of caregiving and increase feelings of burden.

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 as there has not been sufficient studies in the US regarding caregiver burden and the importance of respite . [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] Research on animals has shown that particles from air pollution can accelerate damage to the nervous system. Human studies have linked exposure to air pollution—especially from traffic routes and burning wood—to a higher risk of dementia.

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]

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] One technique that works is to get into the person’s reality. Sometimes referred to therapeutic fabrication, joining their journey, or gentle deception. This is often a challenge as caregivers historically don’t feel comfortable “lying” to their loved ones. It is important for families and professional caregivers to realize that it is not lying, but meeting them in their reality. [37] Even though they may be nonverbal, that does not always mean they no longer wish to participate in the world around them. [38]

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. [39] [40] [41] [42] One study found that objects are recalled significantly better in Alzheimer's patients if they are presented as birthday presents. [43]

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. [44]

Psychological and psychosocial therapies

Offering personally tailored activity sessions to people with dementia in long-term care homes may help manage challenging behavior. [45] 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. [46] [47]

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. [48] 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. [49] Several conditions can result in memory loss or other signs of dementia. Some of these conditions can be treated. If you’re concerned about your memory or other thinking skills, talk to your health care professional.

If you’re worried about thinking skills you’ve noticed in a family member or friend, talk about your concerns and ask about seeing a healthcare professional together to discuss healthcare.

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. [48] 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. [50] 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. [51] 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 [52] and have been further impacted by the COVID‑19 pandemic. [53] A person-centered care approach helps alleviate some of the unfamiliar stress of being in an acute care environment [54] and can also benefit those caring for people with dementia in this setting. [55] 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. [56] [57]

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. [58] [59] This can have a profound impact on the dignity and quality of life of people with dementia and their caregivers. [58] [60]

There is a general lack of understanding and stigma around incontinence. [61] Professionals also lack knowledge and training when it comes to incontinence in people with dementia. [58] [62] 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. [58] [62]

Guidelines suggest that treatment should always be preferred to containment, as pads and catheterization can be uncomfortable and negatively affect the person's dignity. [58] However, the continence problems of people with dementia are different than those of those without, [62] and the care strategy should take their and their caregivers' different perspectives into account. [63] There are guidelines for the continence care needs of people with complex health conditions, such as the Continence Care Framework. [64]

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. [65] [66] However, this may come at a cost with the caregiver often giving up things in their personal life in order to care for their family member with dementia, which can lead to caregiver burden and stress.

While it's vitally important to administer at-home care for a loved one with dementia, it's just as important for the caregiver to receive the same level of care. 80% of patients with dementia are being cared for at home, and one-quarter of dementia caregivers are in the sandwich generation. Caregiver stress is a physically, emotionally, and mentally exhausting task that many at home caregivers do not foresee. Some challenges can include changes in previous relationship roles, feeling isolated from family and friends, juggling multiple roles, managing unpredictability, and feeling undervalued. Common ways a home caregiver will fall habit of include: poor eating habits, failure to exercise, sleep deprivation, failure to rest when ill, and postponement of or failure to make medical appointments for themselves. [67] It is important for caregivers to practice self-care to improve stress, happiness, and energy, reduce anxiety and burnout, and to build stronger interpersonal relationships.

In care homes

Among people with dementia living in care homes, the rates of fecal incontinence are between 30% and 50%. [68] This generally occurs alongside urinary incontinence, but around 30% of people in care homes have only urinary incontinence. [58] [69] 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. [68] [66] If a first-degree relative—like your parents or siblings—has this disease, the risk of developing Alzheimer's increases. [70] The extent to which genetics affect risk within families isn’t entirely clear, and genetic factors can be complex.

One well-understood genetic element is a form of the apolipoprotein E (APOE) gene. One form of this gene, APOE e4, increases the risk of Alzheimer’s disease. Approximately 25% to 30% of the population carries APOE e4. However, not everyone with this form of the gene develops the disease. [71]

In hospitals

In a hospital context, the care of continence is often poor. [58] [72] This can lead to worse clinical outcomes for people with dementia, a higher risk of infection, and the development of urinary and fecal incontinence. [73] 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. [73] 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. [74] [66]

See also

Related Research Articles

<span class="mw-page-title-main">Dementia</span> Long-term brain disorders causing impaired memory, thinking and behavior

Dementia is a syndrome associated with many neurodegenerative diseases, characterized by a general decline in cognitive abilities that affects a person's ability to perform everyday activities. This typically involves problems with memory, thinking, behavior, and motor control. Aside from memory impairment and a disruption in thought patterns, the most common symptoms of dementia include emotional problems, difficulties with language, and decreased motivation. The symptoms may be described as occurring in a continuum over several stages. Dementia ultimately has a significant effect on the individual, their caregivers, and their social relationships in general. A diagnosis of dementia requires the observation of a change from a person's usual mental functioning and a greater cognitive decline than might be caused by the normal aging process.

<span class="mw-page-title-main">Urinary incontinence</span> Uncontrolled leakage of urine

Urinary incontinence (UI), also known as involuntary urination, is any uncontrolled leakage of urine. It is a common and distressing problem, which may have a large impact on quality of life. It has been identified as an important issue in geriatric health care. The term enuresis is often used to refer to urinary incontinence primarily in children, such as nocturnal enuresis. UI is an example of a stigmatized medical condition, which creates barriers to successful management and makes the problem worse. People may be too embarrassed to seek medical help, and attempt to self-manage the symptom in secrecy from others.

<span class="mw-page-title-main">Fecal incontinence</span> Inability to refrain from defecation

Fecal incontinence (FI), or in some forms, encopresis, is a lack of control over defecation, leading to involuntary loss of bowel contents, both liquid stool elements and mucus, or solid feces. When this loss includes flatus (gas), it is referred to as anal incontinence. FI is a sign or a symptom, not a diagnosis. Incontinence can result from different causes and might occur with either constipation or diarrhea. Continence is maintained by several interrelated factors, including the anal sampling mechanism, and incontinence usually results from a deficiency of multiple mechanisms. The most common causes are thought to be immediate or delayed damage from childbirth, complications from prior anorectal surgery, altered bowel habits. An estimated 2.2% of community-dwelling adults are affected. However, reported prevalence figures vary. A prevalence of 8.39% among non-institutionalized U.S adults between 2005 and 2010 has been reported, and among institutionalized elders figures come close to 50%.

Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain, illnesses including other problems whether physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.

<span class="mw-page-title-main">Geriatrics</span> Specialty that focuses on health care of elderly people

Geriatrics, or geriatric medicine, is a medical specialty focused on providing care for the unique health needs of the elderly. The term geriatrics originates from the Greek γέρων geron meaning "old man", and ιατρός iatros meaning "healer". It aims to promote health by preventing, diagnosing and treating disease in older adults. There is no defined age at which patients may be under the care of a geriatrician, or geriatric physician, a physician who specializes in the care of older people. Rather, this decision is guided by individual patient need and the caregiving structures available to them. This care may benefit those who are managing multiple chronic conditions or experiencing significant age-related complications that threaten quality of daily life. Geriatric care may be indicated if caregiving responsibilities become increasingly stressful or medically complex for family and caregivers to manage independently.

Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer, dementia or advanced heart disease than for injury. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply as being terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. Life expectancy for terminal patients is a rough estimate given by the physician based on previous data and does not always reflect true longevity. An illness which is lifelong but not fatal is a chronic condition.

<span class="mw-page-title-main">Adult daycare center</span>

An adult daycare center is typically a non-residential facility that supports the health, nutritional, social, and daily living needs of adults in a professionally staffed, group setting. These facilities provide adults with transitional care and short-term rehabilitation following hospital discharge. The majority of centers provide meals, meaningful activities, and general supervision. The care provided is often a social model or a medical model provided in order to improve participants health and guide their progress in the right direction. Demand for adult daycare centers is increasing with the need for assistance in old age or guidance to reintegrate into society after injury, illness or addiction, and accommodation to return to their former lives or improve upon their quality of life.

<span class="mw-page-title-main">Gerontological nursing</span> Specialty of nursing pertaining to older adults

Gerontological nursing is the specialty of nursing pertaining to older adults. Gerontological nurses work in collaboration with older adults, their families, and communities to support healthy aging, maximum functioning, and quality of life. The term gerontological nursing, which replaced the term geriatric nursing in the 1970s, is seen as being more consistent with the specialty's broader focus on health and wellness, in addition to illness.

<span class="mw-page-title-main">Caregiver</span> Person helping another with activities of daily living

A caregiver, carer or support worker is a paid or unpaid person who helps an individual with activities of daily living. Caregivers who are members of a care recipient's family or social network, and who may have no specific professional training, are often described as informal caregivers. Caregivers most commonly assist with impairments related to old age, disability, a disease, or a mental disorder.

Family caregivers are "relatives, friends, or neighbors who provide assistance related to an underlying physical or mental disability for at-home care delivery and assist in the activities of daily living (ADLs) who are unpaid and have no formal training to provide those services."

A professional live-in caregiver provides personal care and assistance to individuals, including those suffering from chronic illness, Alzheimer's disease, and dementia, within the home setting. Typical duties of a live-in caregiver include meal planning and preparation, assistance with grooming, dressing and toileting, medication management, laundry and light housekeeping, and transportation/escorts to doctor's appointments or social engagements. Professional live-in caregivers are often provided by an outside agency, which may also coordinate their services with the client's preferred in-home health agency and other medical providers.

<span class="mw-page-title-main">Alzheimer's disease</span> Progressive neurodegenerative disease

Alzheimer's disease (AD) is a neurodegenerative disease that usually starts slowly and progressively worsens, and is the cause of 60–70% of cases of dementia. The most common early symptom is difficulty in remembering recent events. As the disease advances, symptoms can include problems with language, disorientation, mood swings, loss of motivation, self-neglect, and behavioral issues. As a person's condition declines, they often withdraw from family and society. Gradually, bodily functions are lost, ultimately leading to death. Although the speed of progression can vary, the average life expectancy following diagnosis is three to twelve years.

Sundowning, or sundown syndrome, is a neurological phenomenon associated with increased confusion and restlessness in people with delirium or some form of dementia. It is most commonly associated with Alzheimer's disease but is also found in those with other forms of dementia. The term sundowning was coined by nurse Lois K. Evans in 1987 due to the timing of the person's increased confusion beginning in the late afternoon and early evening. For people with sundown syndrome, a multitude of behavioral problems begin to occur and are associated with long-term adverse outcomes. Sundowning seems to occur more frequently during the middle stages of Alzheimer's disease and mixed dementia and seems to subside with the progression of the person's dementia. People are generally able to understand that this behavioral pattern is abnormal. Research shows that 20–45% of people with Alzheimer's will experience some variation of sundowning confusion. However, despite lack of an official diagnosis of sundown syndrome in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), there is currently a wide range of reported prevalence.

Wandering occurs when a person with dementia roams around and becomes lost or confused about their location. It is a common behavior that can cause great risk for the person, and is often the major priority for caregivers. It is estimated to be the most common form of disruption from people with dementia within institutions. Although it occurs in several types of dementia, wandering is especially common in people with Alzheimer's disease (AD). People with dementia often wander because they are stressed, looking for someone or something, attending to basic needs, engaging in past routines, or with visual-spatial problems. Other times, they may wander without aim at all.

Caregiver syndrome or caregiver stress is a condition that strongly manifests exhaustion, anger, rage, or guilt resulting from unrelieved caring for a chronically ill patient. This condition is not listed in the United States' Diagnostic and Statistical Manual of Mental Disorders, although the term is often used by many healthcare professionals in that country. The equivalent used in many other countries, the ICD-11, does include the condition.

An informal or primary caregiver is an individual in a cancer patient's life that provides unpaid assistance and cancer-related care. Caregiving is defined as the processing of assiting someone who can't care for themselves, which includes physical, mental, emotional, social, and spiritual needs. Due to the typically late onset of cancer, caregivers are often the spouses and/or children of patients, but may also be parents, other family members, or close friends. Taking care of family members at home is a complicated experience. The relationships involved constantly shift and change, in expected and unexpected ways. The expected or expected changes can negatively affect physical health, emotions, social life, and spiritual well-being of the caregiver. Informal caregivers are a major form of support for the cancer patient because they provide most care outside of the hospital environment. This support includes:

For patients with Alzheimer's disease, music therapy provides a beneficial interaction between a patient and an individualized musical regimen and has been shown to increase cognition and slow the deterioration of memory loss. Music therapy is a clinical and evidence-based intervention that involves music in some capacity and includes both a participant and a music therapist who have completed an accredited music therapy program.

Caregiving by country is the regional variation of caregiving practices as distinguished among countries.

Caregiver burden is the stress which is perceived by caregivers due to the home care situation. The subjective burden is considered to be one of the most important predictors of negative outcomes from the home care situation.

Homecare, also known as domiciliary care, personal care or social care, is health care or supportive care provided in the individual home where the patient or client is living, generally focusing on paramedical aid by professional caregivers, assistance in daily living for ill, disabled or elderly people, or a combination thereof. Depending on legislation, a wide range of other services can also be included in homecare.

References

  1. 1 2 Reilly S, Miranda-Castillo C, Malouf R, Hoe J, Toot S, Challis D, Orrell M (January 2015). "Case management approaches to home support for people with dementia". The Cochrane Database of Systematic Reviews. 1 (1): CD008345. doi:10.1002/14651858.CD008345.pub2. PMC   6823260 . PMID   25560977.
  2. 1 2 "Tips for Caregivers and Families of People With Dementia". www.nia.nih.gov. Retrieved 2022-10-03.
  3. ↑ [ dead link ]MetLife Mature Market Institute (August 2006). "The MetLife Study of Alzheimer's Disease: The Caregiving Experience" (PDF). Archived from the original (PDF) on 2008-06-25. Retrieved 2008-02-12.
  4. ↑ Schulz R, O'Brien AT, Bookwala J, Fleissner K (December 1995). "Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes". The Gerontologist. 35 (6): 771–791. doi:10.1093/geront/35.6.771. PMID   8557205.
  5. ↑ Cooper C, Balamurali TB, Livingston G (April 2007). "A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia". International Psychogeriatrics. 19 (2): 175–195. doi:10.1017/S1041610206004297. PMID   17005068. S2CID   23104276.
  6. 1 2 Adams KB (June 2008). "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. doi:10.1017/S1041610207006278. PMID   17937825. S2CID   37347830.
  7. ↑ "Most people caring for relatives with dementia experience loneliness". NIHR Evidence (Plain English summary). 2020-07-22. doi:10.3310/alert_40575. S2CID   243269845.
  8. 1 2 Victor CR, Rippon I, Quinn C, Nelis SM, Martyr A, Hart N, et al. (July 2021). "The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme". Aging & Mental Health. 25 (7): 1232–1238. doi: 10.1080/13607863.2020.1753014 . hdl: 10454/17813 . PMID   32306759. S2CID   216028843.
  9. 1 2 3 Samson ZB, Parker M, Dye C, Hepburn K (September 2016). "Experiences and Learning Needs of African American Family Dementia Caregivers". American Journal of Alzheimer's Disease and Other Dementias. 31 (6): 492–501. doi:10.1177/1533317516628518. PMC   10852808 . PMID   26953236. S2CID   31137751.
  10. 1 2 Richardson TJ, Lee SJ, Berg-Weger M, Grossberg GT (July 2013). "Caregiver health: health of caregivers of Alzheimer's and other dementia patients". Current Psychiatry Reports. 15 (7): 367. doi:10.1007/s11920-013-0367-2. PMID   23712718. S2CID   46552141.
  11. 1 2 Alzheimer's Association (Mar 2012). "2012 Alzheimer's disease facts and figures". Alzheimer's & Dementia. 8 (2): 131–168. doi:10.1016/j.jalz.2012.02.001. PMID   22404854. S2CID   202255258.
  12. ↑ Schulz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A, Zhang S (August 2004). "Long-term care placement of dementia patients and caregiver health and well-being". JAMA. 292 (8): 961–967. doi: 10.1001/jama.292.8.961 . PMID   15328328.
  13. ↑ Thommessen B, Aarsland D, Braekhus A, Oksengaard AR, Engedal K, Laake K (January 2002). "The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease". International Journal of Geriatric Psychiatry. 17 (1): 78–84. doi:10.1002/gps.524. PMID   11802235. S2CID   23155635.
  14. ↑ Hirono N, Kobayashi H, Mori E (June 1998). "[Caregiver burden in dementia: evaluation with a Japanese version of the Zarit caregiver burden interview]". No to Shinkei = Brain and Nerve (in Japanese). 50 (6): 561–567. PMID   9656252.
  15. ↑ Ławnik A, Sakowicz D (2020). "The Nurse's Role in Caring for Alzheimer's Patients". Health Problems of Civilization. 15 (1): 23–28. doi: 10.5114/hpc.2020.99251 . ISSN   2353-6942. S2CID   229246535.
  16. ↑ Marvardi M, Mattioli P, Spazzafumo L, Mastriforti R, Rinaldi P, Polidori MC, et al. (February 2005). "The Caregiver Burden Inventory in evaluating the burden of caregivers of elderly demented patients: results from a multicenter study". Aging Clinical and Experimental Research. 17 (1): 46–53. doi:10.1007/bf03337720. PMID   15847122. S2CID   24250124.
  17. ↑ Meuser TM, Marwit SJ (October 2001). "A comprehensive, stage-sensitive model of grief in dementia caregiving". The Gerontologist. 41 (5): 658–670. doi: 10.1093/geront/41.5.658 . PMID   11574711.
  18. ↑ Frank JB (December 2007 – January 2008). "Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis". American Journal of Alzheimer's Disease and Other Dementias. 22 (6): 516–527. doi: 10.1177/1533317507307787 . PMC   10846068 . PMID   18166611. S2CID   25646456.
  19. ↑ Timmermann Sandra (September 2004). "Ronald Reagan, grief and bereavement: what we need to know about the grieving process" (PDF). Journal of Financial Service Professionals. Archived from the original (PDF) on 2009-04-11. Retrieved 2008-03-02.
  20. ↑ Ouanes S, Popp J (2019). "High Cortisol and the Risk of Dementia and Alzheimer's Disease: A Review of the Literature". Frontiers in Aging Neuroscience. 11: 43. doi: 10.3389/fnagi.2019.00043 . PMC   6405479 . PMID   30881301.
  21. ↑ Harper AE, Rouch S, Leland NE, Turner RL, Mansbach WE, Day CE, Terhorst L (April 2022). "A Systematic Review of Tools Assessing the Perspective of Caregivers of Residents With Dementia". Journal of Applied Gerontology. 41 (4): 1196–1208. doi:10.1177/07334648211028692. PMID   34229505. S2CID   235758241.
  22. ↑ Ławnik A, Sakowicz D (2020). "The Nurse's Role in Caring for Alzheimer's Patients". Health Problems of Civilization. 15 (1): 23–28. doi: 10.5114/hpc.2020.99251 . ISSN   2353-6942. S2CID   229246535.
  23. 1 2 "Respite Care". Alz.org. 2020.
  24. 1 2 Maayan N, Soares-Weiser K, Lee H (January 2014). "Respite care for people with dementia and their carers". The Cochrane Database of Systematic Reviews (1): CD004396. doi:10.1002/14651858.CD004396.pub3. PMC   11089513 . PMID   24435941.
  25. ↑ Vandepitte S, Van Den Noortgate N, Putman K, Verhaeghe S, Verdonck C, Annemans L (December 2016). "Effectiveness of respite care in supporting informal caregivers of persons with dementia: a systematic review". International Journal of Geriatric Psychiatry. 31 (12): 1277–1288. doi:10.1002/gps.4504. PMID   27245986. S2CID   3464912.
  26. ↑ Gaugler JE, Kane RL, Kane RA, Newcomer R (April 2005). "Early community-based service utilization and its effects on institutionalization in dementia caregiving". The Gerontologist. 45 (2): 177–185. doi: 10.1093/geront/45.2.177 . PMID   15799982.
  27. ↑ Fleming R, Purandare N (November 2010). "Long-term care for people with dementia: environmental design guidelines". International Psychogeriatrics. 22 (7): 1084–1096. doi:10.1017/S1041610210000438. PMID   20478095. S2CID   12831335.
  28. 1 2 3 4 Yaghmour SM (January 2022). "Impact of settings and culture on nurses' knowledge of and attitudes and perceptions towards people with dementia: An integrative literature review". Nursing Open. 9 (1): 66–93. doi:10.1002/nop2.1106. PMC   8685848 . PMID   34719132.
  29. ↑ Davis S, Byers S, Nay R, Koch S (2009). "Guiding design of dementia friendly environments in residential care settings: Considering the living experiences". Dementia. 8 (2): 185–203. doi:10.1177/1471301209103250. S2CID   146438743.
  30. ↑ Brownlee J (2015-08-19). "Fun, Colorful Tableware Designed For Alzheimer's Patients". Fast Company. Retrieved 2021-03-10.
  31. ↑ "Highlights from Designed in California". SFMOMA. Retrieved 2021-03-10.
  32. ↑ Scott C (2015-09-03). "Tableware designed for Alzheimer's patients". CNN. Archived from the original on 2015-09-05. Retrieved 2021-03-10.
  33. ↑ "Alzheimer's Disease Symptoms". CaringKindNYC.org. Caring Kind. 30 November 2015. Retrieved 18 September 2017.
  34. ↑ Norbergh KG, Helin Y, Dahl A, Hellzén O, Asplund K (May 2006). "Nurses' attitudes towards people with dementia: the semantic differential technique". Nursing Ethics. 13 (3): 264–274. doi:10.1191/0969733006ne863oa. PMID   16711185. S2CID   12327034.
  35. ↑ Rickert J (January 24, 2012). "Patient-centered care and how to get there". Health Affairs Forefront. Project HOPE: The People-to-People Health Foundation, Inc. doi:10.1377/forefront.20120124.016506.
  36. ↑ Cantone D, Attena F, Cerrone S, Fabozzi A, Rossiello R, Spagnoli L, Pelullo CP (June 2019). "Lying to patients with dementia: Attitudes versus behaviours in nurses". Nursing Ethics. 26 (4): 984–992. doi:10.1177/0969733017739782. PMID   29161971. S2CID   43859132.
  37. ↑ "Communication and Alzheimer's". Alzheimer'sAssociation.org. Alzheimer's Association. 2024. Retrieved 3 April 2024.
  38. ↑ Ellis M, Astell A (August 1, 2017). "Communicating with people living with dementia who are nonverbal: The creation of Adaptive Interaction". PLOS ONE. 12 (8): e0180395. Bibcode:2017PLoSO..1280395E. doi: 10.1371/journal.pone.0180395 . PMC   5538738 . PMID   28763445.
  39. ↑ Kazui H, Mori E, Hashimoto M, Hirono N, Imamura T, Tanimukai S, et al. (October 2000). "Impact of emotion on memory. Controlled study of the influence of emotionally charged material on declarative memory in Alzheimer's disease". The British Journal of Psychiatry. 177 (4): 343–347. doi: 10.1192/bjp.177.4.343 . PMID   11116776.
  40. ↑ Moayeri SE, Cahill L, Jin Y, Potkin SG (March 2000). "Relative sparing of emotionally influenced memory in Alzheimer's disease". NeuroReport. 11 (4): 653–655. doi:10.1097/00001756-200003200-00001. PMID   10757495. S2CID   36894321.
  41. ↑ Boller F, El Massioui F, Devouche E, Traykov L, Pomati S, Starkstein SE (2002). "Processing emotional information in Alzheimer's disease: effects on memory performance and neurophysiological correlates". Dementia and Geriatric Cognitive Disorders. 14 (2): 104–112. doi:10.1159/000064932. PMID   12145458. S2CID   31468228.
  42. ↑ Satler C, Garrido LM, Sarmiento EP, Leme S, Conde C, Tomaz C (December 2007). "Emotional arousal enhances declarative memory in patients with Alzheimer's disease". Acta Neurologica Scandinavica. 116 (6): 355–360. doi: 10.1111/j.1600-0404.2007.00897.x . PMID   17986092. S2CID   18207073.
  43. ↑ Sundstrøm M (July 2011). "Modeling recall memory for emotional objects in Alzheimer's disease". Neuropsychology, Development, and Cognition. Section B, Aging, Neuropsychology and Cognition. 18 (4): 396–413. doi:10.1080/13825585.2011.567324. PMID   21728888. S2CID   3245332.
  44. ↑ Van der Roest HG, Wenborn J, Pastink C, Dröes RM, Orrell M (June 2017). "Assistive technology for memory support in dementia". The Cochrane Database of Systematic Reviews. 2017 (6): CD009627. doi:10.1002/14651858.cd009627.pub2. PMC   6481376 . PMID   28602027.
  45. ↑ Möhler R, Calo S, Renom A, Renom H, Meyer G (March 2023). "Personally tailored activities for improving psychosocial outcomes for people with dementia in long-term care". The Cochrane Database of Systematic Reviews. 2023 (3): CD009812. doi:10.1002/14651858.CD009812.pub3. PMC   10010156 . PMID   36930048.
  46. ↑ "The WHELD programme for people with dementia helps care home staff deliver person-centred care". NIHR Evidence (Plain English summary). 2020-11-26. doi:10.3310/alert_42713. S2CID   240719455.
  47. ↑ Ballard, Clive; Orrell, Martin; Moniz-Cook, Esme; Woods, Robert; Whitaker, Rhiannon; Corbett, Anne; Aarsland, Dag; Murray, Joanna; Lawrence, Vanessa; Testad, Ingelin; Knapp, Martin; Romeo, Renee; Zala, Darshan; Stafford, Jane; Hoare, Zoe; Garrod, Lucy; Sun, Yongzhong; McLaughlin, Eddie; Woodward-Carlton, Barbara; Williams, Gareth; Fossey, Jane (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. S2CID   225489651.
  48. 1 2 Rantala M, Kankkunen P, Kvist T, Hartikainen S (March 2014). "Barriers to postoperative pain management in hip fracture patients with dementia as evaluated by nursing staff". Pain Management Nursing. 15 (1): 208–219. doi:10.1016/j.pmn.2012.08.007. PMID   24602437.
  49. ↑ Evripidou M, Merkouris A, Charalambous A, Papastavrou E (July 2019). "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. doi:10.1136/bmjopen-2019-030459. PMC   6661557 . PMID   31326938.
  50. ↑ Brorson H, Plymoth H, Örmon K, Bolmsjö I (March 2014). "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. doi:10.1016/j.pmn.2012.10.005. PMID   23453467.
  51. ↑ Surr CA, Parveen S, Smith SJ, Drury M, Sass C, Burden S, Oyebode J (June 2020). "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. doi: 10.1186/s12913-020-05382-4 . PMC   7275489 . PMID   32503536.
  52. ↑ Chenoweth L, Cook J, Williams A (September 2021). "Perceptions of Care Quality during an Acute Hospital Stay for Persons with Dementia and Family/Carers". Healthcare. 9 (9): 1176. doi: 10.3390/healthcare9091176 . PMC   8469973 . PMID   34574951.
  53. ↑ Manthorpe J, Iliffe S (January 2021). "Care homes: averting market failure in a post-covid-19 world". BMJ. 372 (2): n118. doi:10.1177/14713012211053971. PMC   8811334 . PMID   33461971.
  54. ↑ Gwernan-Jones R, Lourida I, Abbott RA, Rogers M, Green C, Ball S, et al. (2020-11-23). "Understanding and improving experiences of care in hospital for people living with dementia, their carers and staff: three systematic reviews". Health Services and Delivery Research. 8 (43): 1–248. doi: 10.3310/hsdr08430 . PMID   33237687. S2CID   229498422.
  55. ↑ Gwernan-Jones R, Abbott R, Lourida I, Rogers M, Green C, Ball S, et al. (December 2020). "The experiences of hospital staff who provide care for people living with dementia: A systematic review and synthesis of qualitative studies". International Journal of Older People Nursing. 15 (4): e12325. doi: 10.1111/opn.12325 . PMID   32412167. S2CID   218649147.
  56. ↑ Abbott RA, Cheeseman D, Hemsley A, Thompson Coon J (June 2021). "Can person-centred care for people living with dementia be delivered in the acute care setting?". Age and Ageing. 50 (4): 1077–1080. doi:10.1093/ageing/afab065. PMC   8244565 . PMID   33890625.
  57. ↑ "Commitment to the care of people with dementia in general hospitals (SPACE principles)" (PDF). Royal College of Nursing. 2011.
  58. 1 2 3 4 5 6 7 Imison C, Kwint J (21 June 2022). "Continence, dementia, and care that preserves dignity". NIHR Evidence. doi:10.3310/nihrevidence_51255. S2CID   251785991.
  59. ↑ Grant RL, Drennan VM, Rait G, Petersen I, Iliffe S (August 2013). Prince MJ (ed.). "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. doi: 10.1371/journal.pmed.1001505 . PMC   3754889 . PMID   24015113.
  60. ↑ Murphy C, de Laine C, Macaulay M, Avery M, Fader M (January 2022). "A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment". Age and Ageing. 51 (1): afab221. doi:10.1093/ageing/afab221. PMC   8753012 . PMID   34888621.
  61. ↑ "My bladder and bowel own my life." A collaborative workshop addressing the need for continence research (PDF). Age UK. 2018.
  62. 1 2 3 Murphy C, De Laine C, Macaulay M, Hislop Lennie K, Fader M (May 2021). "Problems faced by people living at home with dementia and incontinence: causes, consequences and potential solutions". Age and Ageing. 50 (3): 944–954. doi: 10.1093/ageing/afaa262 . PMID   33320926.
  63. ↑ Drennan VM, Cole L, Iliffe S (November 2011). "A taboo within a stigma? a qualitative study of managing incontinence with people with dementia living at home". BMC Geriatrics. 11 (1): 75. doi: 10.1186/1471-2318-11-75 . PMC   3250935 . PMID   22081876.
  64. ↑ Ostaszkiewicz J (23 April 2017). "Reframing continence care in care-dependence". Geriatric Nursing. 38 (6): 520–526. doi:10.1016/j.gerinurse.2017.03.014. PMID   28442175. S2CID   26282369.
  65. ↑ Drennan VM, Manthorpe J, Ilifffe S (2017-01-01). "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. doi:10.1108/QAOA-06-2017-0020. ISSN   1471-7794.
  66. 1 2 3 "Continence, dementia, and care that preserves dignity". NIHR Evidence (Plain English summary). National Institute for Health and Care Research. 21 June 2022. doi:10.3310/nihrevidence_51255.
  67. ↑ Regensburg A, Foltz D, Madrid E, Maples M (2013). "Dementia, Level 1 Dementia Capable Caregiving" (PDF). Healthcare: 18–23.
  68. 1 2 Goodman C, Norton C, Buswell M, Russell B, Harari D, Harwood R, et al. (August 2017). "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. doi:10.3310/hta21420. PMC   5572116 . PMID   28805188.
  69. ↑ Russell B, Buswell M, Norton C, Malone JR, Harari D, Harwood R, et al. (March 2017). "Supporting people living with dementia and faecal incontinence" (PDF). British Journal of Community Nursing. 22 (3): 110–114. doi:10.12968/bjcn.2017.22.3.110. PMID   28252330. S2CID   30556904.
  70. ↑ "What is Alzheimer's Disease? Causes, Symptoms, Causes and Prevention". IWWB News. 2024-02-08. Retrieved 2024-07-05.
  71. ↑ Murtaza, M. Mubeen (February 8, 2024). "What is Alzheimer's Disease? Causes, Symptoms, Causes and Prevention". IWWB News. Retrieved July 5, 2024.
  72. ↑ Percival J, Abbott K, Allain T, Bradley R, Cramp F, Donovan JL, et al. (April 2021). "'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. doi:10.1136/bmjoq-2021-001380. PMC   8043035 . PMID   33837091.
  73. 1 2 Edwards D, Harden J, Jones A, Featherstone K (July 2021). "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. doi: 10.1186/s13643-021-01743-0 . PMC   8262033 . PMID   34229762.
  74. ↑ Featherstone K, Northcott A, Boddington P, Edwards D, Vougioukalou S, Bale S, et al. (June 2022). "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. doi: 10.3310/QUVV2680 . PMID   35737814. S2CID   249937028.

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