Dementia caregiving

Short description: Form of 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

* 1 Family caregivers
* 1.1 Family caregivers in the U.S.
* 1.1.1 Duration of care
* 1.2 Dementia caregivers in the U.S.
* 1.2.1 Characteristics of caregivers in the U.S.
* 1.2.2 Disparities among dementia family caregivers
* 2 Caregiver burden and respite care
* 3 Environmental design
* 4 Communicating
* 5 Memory strategies
* 5.1 Assistive technology
* 6 Psychological and psychosocial therapies
* 7 Nursing
* 8 Incontinence care
* 8.1 At home
* 8.2 In care homes
* 8.3 In hospitals
* 9 End-of-life decisions and suicide risk
* 9.1 Suicide risk following dementia diagnosis
* 9.2 Assisted dying and family involvement
* 9.3 Ethical considerations and safeguards
* 10 Innovative technologies
* 10.1 Assistive technologies
* 10.2 Companion robots
* 10.3 Telemedicine
* 11 See also
* 12 References
* 13 Further reading

## Family caregivers

A woman and her mother with dementia in Barcelona, Spain

The role of family caregivers, or informal 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.

### Family caregivers in the U.S.

In the United States, approximately 63 millions Americans provide unpaid care to an older adult or person with a chronic health condition.[3] In a study looking at the number of family caregivers in the U.S. from 2011 and 2022, the amount of family caregivers increased by 32%.[4] The majority of caregivers (35%) in the U.S. have care recipients that are either a parent or parent-in-law.

#### Duration of care

Family caregivers in the U.S. provide an average of 5 years providing care to a loved one.[5] They spend approximately 27 hours a week providing care. One third of caregivers anywhere from 21 hours to over 41 hours a week providing care.[3]

### Dementia caregivers in the U.S.

According to the Centers for Disease Control (CDC) Report 2021–2022 Behavioral Risk Factor Surveillance System Data from Women, 23% of family caregivers in the U.S. are dementia family caregivers.[6] While the majority of family (i.e., informal) caregivers are family, approximately 12% are not related (i.e. not relatives), they are community members (e.g., neighbors, friends).[4] However, home-based care may entail tremendous economic and emotional costs. It is noted the cost (physical, financial, emotional) of caregiving for someone with dementia is higher than caregiving for other conditions due to the intensity of caregiving for someone with caregiver.[7]

#### Characteristics of caregivers in the U.S.

The average caregiver in the United States is 51 years old. Women make up the majority of the caregiver population. Of that majority, 61% identify as Non-Hispanic White individuals, compared to 16% identifying as Latino/a/e, 13% Black, and 6% Asian American, Native Hawaiian, and Pacific Islander. For caregivers that are older, the person they usually take care of are their spouses, while younger caregivers often care for older adults (e.g., their parents).[3]

Financial impact on family caregivers

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.[8]

Emotional impact on family caregivers

Caregivers themselves are subject to an increased incidence of depression, anxiety, and, in some cases, physical health issues.[9][10][11] 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.[12][13]

#### Disparities among dementia family caregivers

Minoritized groups, such as African-American and Hispanic caregivers, experience unique challenges that can place them at higher risk for caregiver burden. They often provide a greater amount of hours of care a week, and at a higher intensity. Additionally, caregiving among these groups falls upon one person.[3]

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.[14] African Americans are twice as likely to be diagnosed with dementia as other ethnic groups,[14] and caregivers often materialize as secondary patients due to the severe impact of caregiving on their health and well-being.[15] 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.[16] 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.[11] 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.[15] Furthermore, a substantial number of Hispanic/Latino caregivers revealed limited support, placing them at a higher risk of experiencing burnout and distress.[13] Additionally, existing studies lack a tailored and focused approach to the needs of Hispanic/Latino caregivers.[16]

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."[17] 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.[18] 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."[19] 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.[20] 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."[21]

Caregivers may experience anticipatory grief and ambiguous loss,[22][23][24] and research shows that African American caregivers are less likely to seek help for grief and depression than their Caucasian counterparts.[14] Furthermore, physiological changes such as increased cortisol levels, the body's primary stress hormone, contribute to impaired cognitive function,[25] 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.[26] Nurses should provide information to the caregiver on how to take care of the dementia patient, so the caregiver does not neglect them.[27]

## 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.[28][29] 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 .[29] 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.[28] Respite services provided by a nursing home (or other similar facility) might increase the likelihood of the patient being transferred into an institution,[30] while early utilization of in-home help services can delay institutionalization.[31]

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.[32] This model enhances dementia care in the US by helping patients and caregivers alike to better navigate the healthcare system and social support programs.[32] 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.[32] 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.[33]

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.[34] Nursing home managers do not understand how to take care of their dementia patients either, which could lead to a chaotic and hostile environment.[34] 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.[34] 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.[35] 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.[36][37][38]

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.[39] 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.[40] Nurses feel pain and helplessness when caring for a dementia patient.[34] 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.[41]

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.[42]

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.[43] 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.[44] 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.[45] 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.[46][47] 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.[48][49][50][51] One study found that objects are recalled significantly better in Alzheimer's patients if they are presented as birthday presents.[52]

### 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.[53]

## Psychological and psychosocial therapies

Main article: Medicine:Psychological therapies for dementia

Offering personally tailored activity sessions to people with dementia in long-term care homes may help manage challenging behavior.[54] 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.[55][56]

## 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.[57] 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.[58] Several conditions can result in memory loss or other signs of dementia. Some of these conditions can be treated.

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.[57] 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.[59] 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.[60] 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[61] and have been further impacted by the COVID‑19 pandemic.[62] A person-centered care approach helps alleviate some of the unfamiliar stress of being in an acute care environment[63] and can also benefit those caring for people with dementia in this setting.[64] 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.[65][66]

## 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.[67][68] This can have a profound impact on the dignity and quality of life of people with dementia and their caregivers.[67][69]

There is a general lack of understanding and stigma around incontinence.[70] Professionals also lack knowledge and training when it comes to incontinence in people with dementia.[67][71] 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.[67][71]

Guidelines suggest that treatment should always be preferred to containment, as pads and catheterization can be uncomfortable and negatively affect the person's dignity.[67] However, the continence problems of people with dementia are different than those of those without,[71] and the care strategy should take their and their caregivers' different perspectives into account.[72] There are guidelines for the continence care needs of people with complex health conditions, such as the Continence Care Framework.[73]

### 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.[74][75] 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.[76] 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%.[77] This generally occurs alongside urinary incontinence, but around 30% of people in care homes have only urinary incontinence.[67][78] 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.[77][75]

### In hospitals

In a hospital context, the care of continence is often poor.[67][79] This can lead to worse clinical outcomes for people with dementia, a higher risk of infection, and the development of urinary and fecal incontinence.[80] 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.[80] 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.[81][75]

## End-of-life decisions and suicide risk

The intersection of dementia, suicide risk, and end-of-life decision-making presents complex ethical, medical, and emotional challenges.

### Suicide risk following dementia diagnosis

Research indicates that individuals diagnosed with dementia, particularly in the early stages, may face an elevated risk of suicide. A study found that the risk of suicide was significantly higher within the first three months after a dementia diagnosis, especially among patients diagnosed before the age of 65.[82] Another study highlighted that older adults with dementia had an increased risk of suicide death within one year after diagnosis compared to those without dementia.

### Assisted dying and family involvement

In jurisdictions where physician-assisted dying (PAD) or euthanasia is legal, such as the Netherlands and Belgium, the role of advance directives and family involvement is significant. A study[83] examining attitudes toward PAD in dementia cases revealed that 74% of family respondents found euthanasia permissible for incompetent patients if an advance directive was in place . However, the implementation of such directives can be ethically and legally complex, particularly when patients lose decision-making capacity.

Family members often play a crucial role in end-of-life decisions for individuals with dementia. Their perspectives can influence the consideration of assisted dying, especially when the patient's wishes are documented in advance directives. Nonetheless, the ethical implications of surrogate decision-making remain a topic of ongoing debate.

### Ethical considerations and safeguards

The practice of assisted dying in dementia cases raises ethical concerns, including the potential for abuse and the challenge of ensuring informed consent. Some scholars[84] argue that the practice is fraught with cultural and ethical pitfalls, suggesting that it may not be widely or safely endorsed . Safeguards, such as thorough assessments of patient competence and the presence of clear, voluntary, and well-considered advance directives, are essential to uphold ethical standards in end-of-life care.

In summary, the increased suicide risk following a dementia diagnosis underscores the need for comprehensive support systems for patients and caregivers. While assisted dying remains a contentious issue, particularly in the context of dementia, ongoing discussions aim to balance respect for patient autonomy with ethical and legal responsibilities.

## Innovative technologies

The integration of assistive technologies has influenced dementia caregiving. These technologies aim to improve the quality of life for individuals with dementia, support their independence, and assist caregivers. This section discusses several emerging technologies that have shown potential in achieving these objectives.[85]

### Assistive technologies

Assistive technologies are influencing dementia care by supporting patient autonomy and providing essential assistance to caregivers. These technologies include home automation systems, digital assistive tools, and wearable sensors, all designed to improve the quality of life for individuals with dementia and their caregivers.[86]

* Home Automation Systems: Smart home solutions, such as motion-activated lighting and automated appliances, help create a safer and more manageable environment for dementia patients. These systems can monitor daily activities and detect unusual patterns, alerting caregivers to potential issues and thereby reducing the risk of accidents.[87]
* Digital Assistive Technologies (DATs): Mobile applications and digital tools assist with cognitive tasks by providing reminders for medications and appointments, as well as offering cognitive training exercises. These tools are designed to support memory and executive function, aiding patients in maintaining their routines and independence.[88]
* Wearable Sensors and Remote Monitoring: Wearable devices track vital signs, sleep patterns, and movement, offering real-time health monitoring. These devices can detect anomalies in behavior or physiology, allowing for prompt medical intervention and continuous health assessment.[89]
* Dementia Care Platforms: Technology platforms, such as CareYaya Health Technologies, connect healthcare students with older adults with dementia for on-demand caregiving support.[90][91]

### Companion robots

Companion robots provide social interaction and emotional support for dementia patients. Designed to engage users through conversation, movement, and tactile interactions, these robots can help reduce agitation, loneliness, and anxiety. Paro, a robotic seal, has demonstrated positive effects in dementia care by offering soothing responses to touch and sound. Studies indicate that such robotic companions can enhance mood and promote engagement in daily activities.[92]

### Telemedicine

Telemedicine involves the use of digital communication tools to provide healthcare services remotely. In dementia care, it enables healthcare professionals to conduct consultations and monitor patients without the need for in-person visits. This can be particularly useful for individuals who have mobility challenges or live in remote areas. Telemedicine can also support caregivers by providing remote guidance and assistance, helping to manage care more efficiently and reduce the need for frequent visits to healthcare facilities.[93][94]

## 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). January 2015. doi:10.1002/14651858.CD008345.pub2. PMID 25560977.
2. ↑ 2.0 2.1 "Tips for Caregivers and Families of People With Dementia" (in en). http://www.nia.nih.gov/life-with-dementia/tips-caregivers.
3. ↑ 3.0 3.1 3.2 3.3 AARP & National Alliance for Caregiving. "Caregiving in the US 2025" (in english). https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025/.
4. ↑ 4.0 4.1 Wolff, Jennifer L.; Cornman, Jennifer C.; Freedman, Vicki A. (2025). "The Number Of Family Caregivers Helping Older US Adults Increased From 18 Million To 24 Million, 2011–22". Health Affairs 44 (2): 187–195. doi:10.1377/hlthaff.2024.00978. ISSN 0278-2715. PMC 11869104. https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2024.00978.
5. ↑ AARP & National Alliance for Caregiving. "Caregiving in the US 2025" (in english). https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025/.
6. ↑ CDC (2025-02-14). "Caregiving Among Women 2021-2022" (in en-us). https://www.cdc.gov/healthy-aging-data/infographics/cover-pages/caregiving-among-women-2021-2022.html.
7. ↑ "2023 Alzheimer's disease facts and figures" (in en). Alzheimer's & Dementia 19 (4): 1598–1695. 2023. doi:10.1002/alz.13016. ISSN 1552-5279. https://onlinelibrary.wiley.com/doi/abs/10.1002/alz.13016.
8. ↑ MetLife Mature Market Institute (August 2006). "The MetLife Study of Alzheimer's Disease: The Caregiving Experience". http://www.metlife.com/WPSAssets/14050063731156260663V1FAlzheimerCaregivingExperience.pdf.
9. ↑ "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.
10. ↑ "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.
11. ↑ 11.0 11.1 "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.
12. ↑ "Most people caring for relatives with dementia experience loneliness" (in en). NIHR Evidence. July 22, 2020. doi:10.3310/alert_40575. https://evidence.nihr.ac.uk/alert/most-people-caring-for-relatives-with-dementia-experience-loneliness/.
13. ↑ 13.0 13.1 "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.
14. ↑ 14.0 14.1 14.2 "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.
15. ↑ 15.0 15.1 "Caregiver health: health of caregivers of Alzheimer's and other dementia patients". Current Psychiatry Reports 15 (7). July 2013. doi:10.1007/s11920-013-0367-2. PMID 23712718.
16. ↑ 16.0 16.1 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.
17. ↑ "Long-term care placement of dementia patients and caregiver health and well-being". JAMA 292 (8): 961–967. August 2004. doi:10.1001/jama.292.8.961. PMID 15328328.
18. ↑ "The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease". International Journal of Geriatric Psychiatry 17 (1): 78–84. January 2002. doi:10.1002/gps.524. PMID 11802235.
19. ↑ "[Caregiver burden in dementia: evaluation with a Japanese version of the Zarit caregiver burden interview]" (in ja). No to Shinkei = Brain and Nerve 50 (6): 561–567. June 1998. PMID 9656252.
20. ↑ "The Nurse's Role in Caring for Alzheimer's Patients" (in english). Health Problems of Civilization 15 (1): 23–28. 2020. doi:10.5114/hpc.2020.99251. ISSN 2353-6942. https://www.termedia.pl/THE-NURSE-S-ROLE-IN-CARING-FOR-ALZHEIMER-S-PATIENTS,99,41842,0,1.html.
21. ↑ "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. February 2005. doi:10.1007/bf03337720. PMID 15847122.
22. ↑ "A comprehensive, stage-sensitive model of grief in dementia caregiving". The Gerontologist 41 (5): 658–670. October 2001. doi:10.1093/geront/41.5.658. PMID 11574711.
23. ↑ "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. December 2007 – January 2008. doi:10.1177/1533317507307787. PMID 18166611.
24. ↑ Timmermann Sandra (September 2004). "Ronald Reagan, grief and bereavement: what we need to know about the grieving process". Journal of Financial Service Professionals. http://www.metlife.com/WPSAssets/12935104181198856300V1FRonaldReaganGriefandBereavementLDextended12.07.pdf. Retrieved March 2, 2008.
25. ↑ "High Cortisol and the Risk of Dementia and Alzheimer's Disease: A Review of the Literature". Frontiers in Aging Neuroscience 11. 2019. doi:10.3389/fnagi.2019.00043. PMID 30881301.
26. ↑ "A Systematic Review of Tools Assessing the Perspective of Caregivers of Residents With Dementia". Journal of Applied Gerontology 41 (4): 1196–1208. April 2022. doi:10.1177/07334648211028692. PMID 34229505.
27. ↑ "The Nurse's Role in Caring for Alzheimer's Patients" (in english). Health Problems of Civilization 15 (1): 23–28. 2020. doi:10.5114/hpc.2020.99251. ISSN 2353-6942. https://www.termedia.pl/THE-NURSE-S-ROLE-IN-CARING-FOR-ALZHEIMER-S-PATIENTS,99,41842,0,1.html.
28. ↑ 28.0 28.1 "Respite Care". 2020. https://www.alz.org/help-support/caregiving/care-options/respite-care.
29. ↑ 29.0 29.1 "Respite care for people with dementia and their carers". The Cochrane Database of Systematic Reviews (1). January 2014. doi:10.1002/14651858.CD004396.pub3. PMID 24435941.
30. ↑ "Effectiveness of respite care in supporting informal caregivers of persons with dementia: a systematic review". International Journal of Geriatric Psychiatry 31 (12): 1277–1288. December 2016. doi:10.1002/gps.4504. PMID 27245986.
31. ↑ "Early community-based service utilization and its effects on institutionalization in dementia caregiving". The Gerontologist 45 (2): 177–185. April 2005. doi:10.1093/geront/45.2.177. PMID 15799982.
32. ↑ 32.0 32.1 32.2 "California Department of Aging Strategic Plan". California Department of Aging. https://aging.ca.gov/Providers_and_Partners/Cal_Grows/.
33. ↑ "Long-term care for people with dementia: environmental design guidelines". International Psychogeriatrics 22 (7): 1084–1096. November 2010. doi:10.1017/S1041610210000438. PMID 20478095. https://ro.uow.edu.au/cgi/viewcontent.cgi?article=1675&context=hbspapers.
34. ↑ 34.0 34.1 34.2 34.3 "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. January 2022. doi:10.1002/nop2.1106. PMID 34719132.
35. ↑ "Guiding design of dementia friendly environments in residential care settings: Considering the living experiences". Dementia 8 (2): 185–203. 2009. doi:10.1177/1471301209103250.
36. ↑ "Fun, Colorful Tableware Designed For Alzheimer's Patients" (in en-US). August 19, 2015. https://www.fastcompany.com/3050048/fun-colorful-tableware-designed-for-alzheimers-patients.
37. ↑ "Highlights from Designed in California" (in en-US). https://www.sfmoma.org/read/highlights-designed-ca/.
38. ↑ "Tableware designed for Alzheimer's patients" (in en). September 3, 2015. https://www.cnn.com/2015/09/03/health/eatwell-tableware-design-alzheimers-patient-care/index.html.
39. ↑ "Alzheimer's Disease Symptoms". Caring Kind. November 30, 2015. http://www.caringkindnyc.org/alzheimers-symptoms/.
40. ↑ "Nurses' attitudes towards people with dementia: the semantic differential technique". Nursing Ethics 13 (3): 264–274. May 2006. doi:10.1191/0969733006ne863oa. PMID 16711185.
41. ↑ "Patient-centered care and how to get there". Health Affairs Forefront (Project HOPE: The People-to-People Health Foundation, Inc.). January 24, 2012. doi:10.1377/forefront.20120124.016506. https://www.healthaffairs.org/do/10.1377/forefront.20120124.016506.
42. ↑ "Communicating with people living with dementia who are nonverbal: The creation of Adaptive Interaction". PLOS ONE 12 (8). August 1, 2017. doi:10.1371/journal.pone.0180395. PMID 28763445. Bibcode: 2017PLoSO..1280395E.
43. ↑ "Lying to patients with dementia: Attitudes versus behaviours in nurses". Nursing Ethics 26 (4): 984–992. June 2019. doi:10.1177/0969733017739782. PMID 29161971.
44. ↑ Fabian-Weber, Nicole (February 2, 2024). "Validation therapy for dementia: Experts explain the empathetic approach" (in en). https://www.care.com/c/what-is-validation-therapy/.
45. ↑ "Communication and Alzheimer's". Alzheimer's Association. 2024. https://www.alz.org/help-support/caregiving/daily-care/communications.
46. ↑ Marcus, Jon (February 24, 2023). "How Therapeutic Fibbing and Diversion Can Help Loved Ones with Dementia and Alzheimer's" (in english). https://www.aarp.org/caregiving/health/info-2023/therapeutic-fibbing-dementia-communication.html.
47. ↑ Shanahan, Catherine (December 24, 2016). "To lie or not to lie: Telling dementia patients the truth can be upsetting" (in en). https://www.irishexaminer.com/opinion/commentanalysis/arid-20436558.html.
48. ↑ "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. October 2000. doi:10.1192/bjp.177.4.343. PMID 11116776.
49. ↑ "Relative sparing of emotionally influenced memory in Alzheimer's disease". NeuroReport 11 (4): 653–655. March 2000. doi:10.1097/00001756-200003200-00001. PMID 10757495.
50. ↑ "Processing emotional information in Alzheimer's disease: effects on memory performance and neurophysiological correlates". Dementia and Geriatric Cognitive Disorders 14 (2): 104–112. 2002. doi:10.1159/000064932. PMID 12145458.
51. ↑ "Emotional arousal enhances declarative memory in patients with Alzheimer's disease". Acta Neurologica Scandinavica 116 (6): 355–360. December 2007. doi:10.1111/j.1600-0404.2007.00897.x. PMID 17986092.
52. ↑ "Modeling recall memory for emotional objects in Alzheimer's disease". Neuropsychology, Development, and Cognition. Section B, Aging, Neuropsychology and Cognition 18 (4): 396–413. July 2011. doi:10.1080/13825585.2011.567324. PMID 21728888.
53. ↑ "Assistive technology for memory support in dementia". The Cochrane Database of Systematic Reviews 2017 (6). June 2017. doi:10.1002/14651858.cd009627.pub2. PMID 28602027.
54. ↑ "Personally tailored activities for improving psychosocial outcomes for people with dementia in long-term care". The Cochrane Database of Systematic Reviews 2023 (3). March 2023. doi:10.1002/14651858.CD009812.pub3. PMID 36930048.
55. ↑ "The WHELD programme for people with dementia helps care home staff deliver person-centred care" (in en). NIHR Evidence. November 26, 2020. doi:10.3310/alert_42713. https://evidence.nihr.ac.uk/alert/wheld-dementia-care-homes-person-centred-care/.
56. ↑ 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.
57. ↑ 57.0 57.1 "Barriers to postoperative pain management in hip fracture patients with dementia as evaluated by nursing staff". Pain Management Nursing 15 (1): 208–219. March 2014. doi:10.1016/j.pmn.2012.08.007. PMID 24602437.
58. ↑ "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). July 2019. doi:10.1136/bmjopen-2019-030459. PMID 31326938.
59. ↑ "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.
60. ↑ "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). June 2020. doi:10.1186/s12913-020-05382-4. PMID 32503536.
61. ↑ "Perceptions of Care Quality during an Acute Hospital Stay for Persons with Dementia and Family/Carers". Healthcare 9 (9): 1176. September 2021. doi:10.3390/healthcare9091176. PMID 34574951.
62. ↑ "Care homes: averting market failure in a post-covid-19 world". BMJ 372 (2): n118. January 2021. doi:10.1177/14713012211053971. PMID 33461971.
63. ↑ "Understanding and improving experiences of care in hospital for people living with dementia, their carers and staff: three systematic reviews" (in EN). Health Services and Delivery Research 8 (43): 1–248. November 23, 2020. doi:10.3310/hsdr08430. PMID 33237687.
64. ↑ "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). December 2020. doi:10.1111/opn.12325. PMID 32412167.
65. ↑ "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.
66. ↑ "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.
67. ↑ 67.0 67.1 67.2 67.3 67.4 67.5 67.6 "Continence, dementia, and care that preserves dignity". NIHR Evidence. June 21, 2022. doi:10.3310/nihrevidence_51255. https://evidence.nihr.ac.uk/themedreview/continence-dementia-and-care-that-preserves-dignity/.
68. ↑ "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). August 2013. doi:10.1371/journal.pmed.1001505. PMID 24015113.
69. ↑ "A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment". Age and Ageing 51 (1). January 2022. doi:10.1093/ageing/afab221. PMID 34888621.
70. ↑ "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.
71. ↑ 71.0 71.1 71.2 "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.
72. ↑ "A taboo within a stigma? a qualitative study of managing incontinence with people with dementia living at home". BMC Geriatrics 11 (1). November 2011. doi:10.1186/1471-2318-11-75. PMID 22081876.
73. ↑ "Reframing continence care in care-dependence". Geriatric Nursing 38 (6): 520–526. April 23, 2017. doi:10.1016/j.gerinurse.2017.03.014. PMID 28442175.
74. ↑ "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. January 1, 2017. doi:10.1108/QAOA-06-2017-0020. ISSN 1471-7794.
75. ↑ 75.0 75.1 75.2 "Continence, dementia, and care that preserves dignity". NIHR Evidence (National Institute for Health and Care Research). June 21, 2022. doi:10.3310/nihrevidence_51255. https://evidence.nihr.ac.uk/collection/continence-dementia-and-care-that-preserves-dignity/.
76. ↑ "Dementia, Level 1 Dementia Capable Caregiving". Healthcare: 18–23. 2013. https://www.dshs.wa.gov/sites/default/files/publications/documents/22-1665.pdf.
77. ↑ 77.0 77.1 "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.
78. ↑ "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. https://openaccess.sgul.ac.uk/110998/1/Drennan-V-37760-AAM.pdf.
79. ↑ "'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). April 2021. doi:10.1136/bmjoq-2021-001380. PMID 33837091.
80. ↑ 80.0 80.1 "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). July 2021. doi:10.1186/s13643-021-01743-0. PMID 34229762.
81. ↑ "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.
82. ↑ Alothman, Danah; Card, Timothy; Lewis, Sarah; Tyrrell, Edward; Fogarty, Andrew W.; Marshall, Charles R. (2022-11-01). "Risk of Suicide After Dementia Diagnosis". JAMA Neurology 79 (11): 1148–1154. doi:10.1001/jamaneurol.2022.3094. ISSN 2168-6149. PMID 36190708.
83. ↑ Scheeres-Feitsma, Trijntje M.; van Laarhoven, Angela J. J. M. Keijzer; de Vries, Ralph; Schaafsma, Petruschka; van der Steen, Jenny T. (2023). "Family involvement in euthanasia or Physician Assisted Suicide and dementia: A systematic review" (in en). Alzheimer's & Dementia 19 (8): 3688–3700. doi:10.1002/alz.13094. ISSN 1552-5279. PMID 37186445.
84. ↑ Rajkumar, Ravi Philip (2021-12-22). "Physician-Assisted Suicide in Dementia: Paradoxes, Pitfalls and the Need for Prudence" (in English). Frontiers in Sociology 6. doi:10.3389/fsoc.2021.815233. ISSN 2297-7775. PMID 35004941.
85. ↑ Pappadà, Alessandro; Chattat, Rabih; Chirico, Ilaria; Valente, Marco; Ottoboni, Giovanni (2021-03-24). "Assistive Technologies in Dementia Care: An Updated Analysis of the Literature" (in English). Frontiers in Psychology 12. doi:10.3389/fpsyg.2021.644587. ISSN 1664-1078. PMID 33841281.
86. ↑ "What is assistive technology? | Alzheimer's Society" (in en). https://www.alzheimers.org.uk/get-support/staying-independent/what-assistive-technology.
87. ↑ "Living aids and assistive technology for a person with dementia" (in en). https://www.dementiauk.org/information-and-support/living-with-dementia/living-aids-and-assistive-technology/.
88. ↑ Deakin University (October 7, 2024). MemoryAid - Longitude Prize on Dementia. Retrieved February 27, 2025 - via YouTube.
89. ↑ Khan, Arshia A.; Das, Rupak Kumar; Martin, Anna; Dowling, Dale; Imtiaz, Rana (2024-01-01), Creating an Intelligent Dementia-Friendly Living Space: A Feasibility Study Integrating Assistive Robotics, Wearable Sensors, and Spatial Technology
90. ↑ Malik, Aisha (2024-11-02). "CareYaya is enabling affordable home care by connecting healthcare students with elders" (in en-US). https://techcrunch.com/2024/11/02/careyaya-is-enabling-affordable-home-care-by-connecting-healthcare-students-with-elders/.
91. ↑ "CareYaya seeks to solve 'broken' caregiving system, says CEO Neal Shah" (in en). 2024-10-28. https://www.cnbc.com/video/2024/10/28/careyaya-seeks-to-solve-broken-caregiving-system-says-ceo-neal-shah.html.
92. ↑ Hung, Lillian; Liu, Cindy; Woldum, Evan; Au-Yeung, Andy; Berndt, Annette; Wallsworth, Christine; Horne, Neil; Gregorio, Mario et al. (2019-08-23). "The benefits of and barriers to using a social robot PARO in care settings: a scoping review". BMC Geriatrics 19 (1): 232. doi:10.1186/s12877-019-1244-6. ISSN 1471-2318. PMID 31443636.
93. ↑ Lindauer, Allison; Seelye, Adriana; Lyons, Bayard; Dodge, Hiroko H; Mattek, Nora; Mincks, Katherine; Kaye, Jeffrey; Erten-Lyons, Deniz (2017-10-01). "Dementia Care Comes Home: Patient and Caregiver Assessment via Telemedicine". The Gerontologist 57 (5): e85–e93. doi:10.1093/geront/gnw206. ISSN 0016-9013. PMID 28158415. PMC 5654345. https://academic.oup.com/gerontologist/article/57/5/e85/2967600?utm_source=chatgpt.com&login=false.
94. ↑ Adler-Milstein, Julia; Gopalan, Anjali; Huang, Jie; Toretsky, Christopher; Reed, Mary (2024-11-01). "Patterns of Telemedicine Use in Primary Care for People with Dementia in the Post-pandemic Period" (in en). Journal of General Internal Medicine 39 (15): 2895–2903. doi:10.1007/s11606-024-08836-1. ISSN 1525-1497. PMID 39046633.

## Further reading

* Always On Call: When Illness Turns Families into Caregivers (2nd ed.). Vanderbilt University Press for the United Hospital Fund. 2004. ISBN 978-0-8265-1461-5.
* Hidden Carers. Edinburgh: Dunedin Press. 2006. ISBN 978-1-903765-66-1.
* "Investigating Caregivers' Attitudes and Needs (I CAN) Survey". Alzheimer's Foundation of America. http://www.alzfdn.org/survey.shtml.
* "Investigating Caregivers' Attitudes and Needs (I CAN 2) Survey". Alzheimer's Foundation of America. http://www.alzfdn.org/surveys/index.shtml.
* "The MetLife Market Survey of Adult Day Services & Home Care Costs". MetLife. September 2007. http://www.metlife.com/WPSAssets/18746211091190810760V1F2007ADSHCCStudy.pdf.
* The 36-Hour Day (4th ed.). Baltimore: Johns Hopkins University Press. 2006. pp. 324. ISBN 978-0-8018-8509-9. https://archive.org/details/36hourday00nanc_0/page/324.
* 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. http://www.nia.nih.gov/alzheimers/publication/caring-person-alzheimers-disease/about-guide.
* "Living With Alzheimer's Disease". Visiting Nurse Service of New York. http://www.vnsny.org/caregivers/caregiving-basics/living-with-alzheimers-disease/.
* "Effective Communication with Alzheimer's Patients". Care Communities. http://www.carecommunities.net/blog/effective-communication-with-alzheimers-patients/.

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