Dementia 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^{[citation needed]}. 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 and 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] Nevertheless, it is common for low-income, marginalized patients to utilize community health centers not only to provide relief for their primary caregivers but also as an affordable alternative to privatized, expensive nursing homes to receive just as high-quality care.

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]

In July 2023, the Centers for Medicare & Medicaid Services (CMS) announced increased integration of policy and legislative efforts such as the introduction of Guiding an Improved Dementia Experience (GUIDE) Model within Comprehensive Care for Alzheimer’s Act, an eight year program focused on decreasing burden on caregivers and improving dementia care.^[27] This model enhances dementia care in the US by helping patients and caregivers alike to better navigate the healthcare system and social support programs.^[27] In addition, the CalGrows initiative under the California Department of Aging provides the foundation for direct care workers to improve their skills and satisfaction within respite care. The main target population included non-IHSS direct care workers who support Medi-Cal recipients in the home and at community health centers. This program offers more than 750 free online trainings in which over 25,000 total learners have participated nationally.^[27] These videos help to educate caregivers on techniques to communicate with someone suffering from dementia, such as therapeutic lying, de-escalation and redirection, through scenario practice and role-play, increasing retention and confidence of healthcare workers.

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.^[28]

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.^[29] Nursing home managers do not understand how to take care of their dementia patients either, which could lead to a chaotic and hostile environment.^[29] 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.^[29] 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.^[30] 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.^[31][32][33]

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 advanced 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.^[34] Since dementia patients have trouble communicating their needs, this can be frustrating for the nurse. Nurses may have a hard time forming 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.^[35] Nurses feel pain and helplessness when caring for a dementia patient.^[29] 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.^[36]

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. Even though they may be nonverbal, that does not always mean they no longer wish to participate in the world around them.^[37]

Nurses must use therapeutic communication while talking to patients. Therapeutic lying and validation therapy are tools that caregivers use to reassure patients that they are okay, and it is used in situations that would not harm the patient in any way.^[38] One technique that works is to get into the person’s reality; if the person's current memory status has caused them to believe that it is forty years ago and that she is a mother with children to care for, then the caregiver does not contradict the claim and then try to teach the person that she is actually elderly now, that her children have all grown up, and she is having serious memory problems.^[39] 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.^[40] Often, these are lies of omission. For example, if a person with advanced dementia has forgotten that a beloved family member died years ago, then it is unkind and unhelpful to tell them that the loved one is dead, especially if they are unlikely to remember this "new" information and may ask again in a few minutes.^[41][42] Instead, it is gentler to give an indirect response that acknowledges the subject they are thinking about (e.g., "She's not here right now"), followed by a distraction or a slight change of subject (e.g., "She always loved her garden. Would you like to sit by the window and see if there are any flowers in the garden today?" or "Tell me about her").

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.^{[43][44][45][46]} One study found that objects are recalled significantly better in Alzheimer's patients if they are presented as birthday presents.^[47]

Assistive technology

As of 2017^[update], 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.^[48]

Psychological and psychosocial therapies

Main article: Psychological therapies for dementia

Offering personally tailored activity sessions to people with dementia in long-term care homes may help manage challenging behavior.^[49] 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.^[50][51]

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.^[52] 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.^[53] 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.^[52] 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.^[54] 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.^[55] 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^[56] and have been further impacted by the COVID‑19 pandemic.^[57] A person-centered care approach helps alleviate some of the unfamiliar stress of being in an acute care environment^[58] and can also benefit those caring for people with dementia in this setting.^[59] 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.^[60][61]

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.^[62][63] This can have a profound impact on the dignity and quality of life of people with dementia and their caregivers.^[62][64]

There is a general lack of understanding and stigma around incontinence.^[65] Professionals also lack knowledge and training when it comes to incontinence in people with dementia.^[62][66] 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.^[62][66]

Guidelines suggest that treatment should always be preferred to containment, as pads and catheterization can be uncomfortable and negatively affect the person's dignity.^[62] However, the continence problems of people with dementia are different than those of those without,^[66] and the care strategy should take their and their caregivers' different perspectives into account.^[67] There are guidelines for the continence care needs of people with complex health conditions, such as the Continence Care Framework.^[68]

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.^[69][70] 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.^[71] 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%.^[72] This generally occurs alongside urinary incontinence, but around 30% of people in care homes have only urinary incontinence.^[62][73] 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.^[72][70] If a first-degree relative—like your parents or siblings—has this disease, the risk of developing Alzheimer's increases.^[74] 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.^[75]

In hospitals

In a hospital context, the care of continence is often poor.^[62][76] This can lead to worse clinical outcomes for people with dementia, a higher risk of infection, and the development of urinary and fecal incontinence.^[77] 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.^[77] 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.^[78][70]

See also

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

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Further reading

• Levine C, ed. (2004). Always On Call: When Illness Turns Families into Caregivers (2nd ed.). Vanderbilt University Press for the United Hospital Fund. ISBN 978-0-8265-1461-5.
• Joyce C (2006). Hidden Carers. Edinburgh: Dunedin Press. ISBN 978-1-903765-66-1.
• "Investigating Caregivers' Attitudes and Needs (I CAN) Survey". Alzheimer's Foundation of America. Archived from the original on June 18, 2006.
• "Investigating Caregivers' Attitudes and Needs (I CAN 2) Survey". Alzheimer's Foundation of America. Archived from the original on October 27, 2007. Retrieved February 26, 2008.
• "The MetLife Market Survey of Adult Day Services & Home Care Costs" (PDF). MetLife. September 2007. Archived from the original (PDF) on May 9, 2008. Retrieved February 27, 2008.
• Mace NL, Rabins PV (2006). The 36-Hour Day (4th ed.). Baltimore: Johns Hopkins University Press. pp. 324. ISBN 978-0-8018-8509-9.
• Caring for a Person with Alzheimer's Disease: Your Easy-to-Use Guide from the National Institute on Aging. US Department of Health and Human Services, National Institute on Aging, National Institutes of Health. 2009.
• "Living With Alzheimer's Disease". Visiting Nurse Service of New York. Retrieved March 30, 2011.
• "Effective Communication with Alzheimer's Patients". Care Communities. Archived from the original on September 19, 2023. Retrieved November 16, 2022.