Dementia caregiving

As populations age, caring for people with dementia has become more common. Caregiving for dementia may consist of formal care and informal care. Formal care involves medical professionals, facilities, and community services, 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, whether at home or in a long-term care facility.

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]

Care types and settings

Family caregiving

The role of family caregivers, or informal caregivers, is becoming increasingly important. Receiving 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.

While family caregivers often care for people with dementia at home, they also provide a helpful function within nursing or residential aged care facilities. Caregivers of these people 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.[2] Nurses can aid caregivers by providing information on how to take care of the person with dementia patient.[3]

Hospital care

In general, 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[4] and have been further impacted by the COVID‑19 pandemic.[5] A person-centered care approach helps alleviate some of the unfamiliar stress of being in an acute care environment[6] and can also benefit those caring for people with dementia in this setting.[7] 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.[8][9]

Approaches and interventions

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.[10] 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.[11][12]

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.[13] The environment where those with dementia eat their meals should be inviting and foster conversation and socialization.[14]

Memory strategies

The episodic memory of people with Alzheimer's declines progressively. However, when a memory is tied to strong emotions, they are more likely to remember it. Relying on emotional memory can be helpful in daily caregiving techniques.[15]

There is a variety of assistive technology devices aimed at supporting people with dementia to manage memory issues. However, it is not presently certain whether or not assistive technology products are beneficial for memory problems at all.[16]

Communication

Caring for someone with dementia is especially challenging due to the fact that their ability to speak or otherwise communicate might get impaired and they may seem unable to understand what's said to them.[17] Since those with dementia typically have trouble communicating their needs, this can be frustrating for the nurse as well. Nurses may have a hard time forming relationships with those who they care for because of the communication barrier.[18]

Care approaches such as person-centered care attempt to address the difficulty in communication between caregivers and people with dementia.[19]

To communicate with people with dementia 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.[20]

Therapeutic lying

Therapeutic lying (also known as therapeutic fabrication, deception, or fibbing) and validation therapy are tools that caregivers might use to reassure patients that they are okay.[21]

These strategies are often challenging, as caregivers might not 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.[22][23] 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 potentially unhelpful to tell them that the loved one has passed away, especially if they are unlikely to remember this "new" information and may ask again in a few minutes.[24][25]

Pain assessment

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.[26]

To prevent the elderly with dementia from receiving inadequate recognition of pain, some approaches can help aid in assessments. Interpreting body language can 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.[27]

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.[28][29] This can have a profound impact on the dignity and quality of life of people with dementia and their caregivers.[28][30]

There is a general lack of understanding and stigma around incontinence.[31] Professionals also lack knowledge and training when it comes to incontinence in people with dementia.[28][32] 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.[28][32]

Professional guidelines suggest that treatment should always be preferred to containment, as pads and catheterization can be uncomfortable and negatively affect the person's dignity.[28] However, the continence problems of people with dementia are different than those of those without,[32] and the care strategy should take their and their caregivers' different perspectives into account.[33] There are guidelines for the continence care needs of people with complex health conditions, such as the Continence Care Framework.[34]

For people with dementia living at home, incontinence care can be improved by 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.[35][36]

In care home settings, continence care needs to 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.[37][36]

In a hospital context, the care of continence is often poor.[28][38] This can lead to worse clinical outcomes for people with dementia, a higher risk of infection, and the development of urinary and fecal incontinence.[39] After a clinical assessment, a personalized continence plan should be created, which includes identifying reversible causes and contributing factors. 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.[39]

Assistive technologies

As part of dementia caregiving, assistive technologies may be used with the aim to improve the quality of life for individuals with dementia, support their independence, and assist caregivers.[40] These technologies include home automation systems, digital assistive tools, and wearable sensors.[41]

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, enhance mood, and promote engagement in daily activities. For example, Paro, a robotic seal, has demonstrated positive effects in dementia care by offering soothing responses to touch and sound.[42]

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. 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.[43]

Caregiver wellbeing

Emotional impact

Informal, unpaid caregivers are also subject to an increased incidence of depression, anxiety, and, in some cases, physical health issues.[44][45] Family caregivers often feel lonely and experience social isolation due to the lack of support.[44][45]

Caregivers may experience anticipatory grief, ambiguous loss.[46]

Caregiver burden

Caring for someone with dementia can be accompanied by various 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.[47]

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.

Stress and burnout experienced by nurses in acute or community care settings has a negative impact the quality of services for people with dementia. Conversely, improving the workplace environment for nurses can lead to better help with the people with dementia they care for.[48]

Respite care

Main article: Respite care

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.[49][50] However, it is currently not known how beneficial these interventions are and if there are any potential drawbacks.[50]

Respite services provided to family members or friends caring for someone with dementia can have positive effects such as stress reduction, increased time for relaxation, socialization, and focusing on personal tasks.[49] Respite services provided by a nursing home (or other similar facilities) might increase the likelihood of the patient being transferred into an institution,[51] while early utilization of in-home help services can delay institutionalization.[52]

End-of-life decisions

End-of life decisions for people with dementia present ethical, medical and emotional challenges.[53]

Assisted dying

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 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.[54][55]

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.[54]

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. According to research examining attitudes toward PAD in dementia cases revealed that 74% of families found euthanasia permissible for incapacitated 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.[54]

By country

United States

Millions of people living in the United States take care of a friend or family member with Alzheimer's disease or a related dementia.

Family caregivers

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.[56] 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).[57] 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.[58]

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.[59]

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.[60]

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.[61] African American caregivers are also less likely to seek help for grief and depression than their Caucasian counterparts.[61]

African Americans are twice as likely to be diagnosed with dementia as other ethnic groups,[61] and caregivers often materialize as secondary patients due to the severe impact of caregiving on their health and well-being.[62] 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.[63] 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.[64] 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.[62] Furthermore, a substantial number of Hispanic/Latino caregivers revealed limited support, placing them at a higher risk of experiencing burnout and distress.[65] Additionally, existing studies lack a tailored and focused approach to the needs of Hispanic/Latino caregivers.[63]

See also

References

  1. ^ a b 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. ^ 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.
  3. ^ 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.
  4. ^ 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.
  5. ^ 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.
  6. ^ Gwernan-Jones R, Lourida I, Abbott RA, Rogers M, Green C, Ball S, et al. (November 23, 2020). "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.
  7. ^ 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. hdl:10871/121324. PMID 32412167. S2CID 218649147.
  8. ^ 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.
  9. ^ "Commitment to the care of people with dementia in general hospitals (SPACE principles)" (PDF). Royal College of Nursing. 2011.
  10. ^ 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.
  11. ^ "The WHELD programme for people with dementia helps care home staff deliver person-centred care". NIHR Evidence (Plain English summary). November 26, 2020. doi:10.3310/alert_42713. S2CID 240719455.
  12. ^ 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.
  13. ^ 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.
  14. ^ 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.
  15. ^ Kapoor, Arunima; Mather, Mara; Nation, Daniel A. (August 4, 2025). "Emotional enhancement of memory in Alzheimer's disease dementia: a systematic review". Nature Mental Health. 3 (9): 1078–1087. doi:10.1038/s44220-025-00470-y. ISSN 2731-6076. PMC 12839547. PMID 41608075.
  16. ^ 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.
  17. ^ "Alzheimer's Disease Symptoms". CaringKindNYC.org. Caring Kind. November 30, 2015. Retrieved September 18, 2017.
  18. ^ 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.
  19. ^ 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.
  20. ^ 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.
  21. ^ 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.
  22. ^ Fabian-Weber, Nicole (February 2, 2024). "Validation therapy for dementia: Experts explain the empathetic approach". Care.com Resources. Retrieved October 4, 2024.
  23. ^ "Communication and Alzheimer's". Alzheimer'sAssociation.org. Alzheimer's Association. 2024. Retrieved April 3, 2024.
  24. ^ Marcus, Jon (February 24, 2023). "How Therapeutic Fibbing and Diversion Can Help Loved Ones with Dementia and Alzheimer's". AARP. Retrieved October 4, 2024.
  25. ^ Shanahan, Catherine (December 24, 2016). "To lie or not to lie: Telling dementia patients the truth can be upsetting". Irish Examiner. Retrieved October 4, 2024.
  26. ^ 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.
  27. ^ 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.
  28. ^ a b c d e f Imison C, Kwint J (June 21, 2022). "Continence, dementia, and care that preserves dignity". NIHR Evidence. doi:10.3310/nihrevidence_51255. S2CID 251785991.
  29. ^ 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.
  30. ^ 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.
  31. ^ "My bladder and bowel own my life." A collaborative workshop addressing the need for continence research (PDF). Age UK. 2018. Archived from the original (PDF) on November 14, 2022. Retrieved June 27, 2022.
  32. ^ a b c 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.
  33. ^ 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.
  34. ^ Ostaszkiewicz J (April 23, 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.
  35. ^ Drennan VM, Manthorpe J, Ilifffe S (January 1, 2017). "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.
  36. ^ a b "Continence, dementia, and care that preserves dignity". NIHR Evidence (Plain English summary). National Institute for Health and Care Research. June 21, 2022. doi:10.3310/nihrevidence_51255.
  37. ^ 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.
  38. ^ 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.
  39. ^ a b 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.
  40. ^ Pappadà, Alessandro; Chattat, Rabih; Chirico, Ilaria; Valente, Marco; Ottoboni, Giovanni (March 24, 2021). "Assistive Technologies in Dementia Care: An Updated Analysis of the Literature". Frontiers in Psychology. 12 644587. doi:10.3389/fpsyg.2021.644587. hdl:11585/820952. ISSN 1664-1078. PMC 8024695. PMID 33841281.
  41. ^ "What is assistive technology? | Alzheimer's Society". www.alzheimers.org.uk. Retrieved February 27, 2025.
  42. ^ Hung, Lillian; Liu, Cindy; Woldum, Evan; Au-Yeung, Andy; Berndt, Annette; Wallsworth, Christine; Horne, Neil; Gregorio, Mario; Mann, Jim; Chaudhury, Habib (August 23, 2019). "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. PMC 6708202. PMID 31443636.
  43. ^ Borges do Nascimento, Israel Júnior; Abdulazeem, Hebatullah Mohamed; Weerasekara, Ishanka; Sharifan, Amin; Grandi Bianco, Victor; Kularathne, Indunil; Cunningham, Ciara; Sathian, Brijesh; Deeken, Genevieve; Østengaard, Lasse; Frederique-Djurdjevic, Rachel; Hoof, Joost van; Lazeri, Ledia; Redlich, Cassie; Marston, Hannah R (November 6, 2025). "An Overview of Reviews on Telemedicine and Telehealth in Dementia Care: Mixed Methods Synthesis". JMIR Mental Health. 12: e75266–e75266. doi:10.2196/75266. ISSN 2368-7959. PMC 12975415. PMID 41194522.
  44. ^ a b Yuan, Shuai; Zhang, Fengying; Pu, Lihui; Lv, Juan; Xie, Xiao Feng; Lin, Lin; Qiu, Mengying; Huang, Lei; Jiang, Wenyi; Zhu, Jiayi; Wei, Liqin (June 3, 2025). "Social support interventions for caregivers of older adults with dementia: a scoping review". BMJ Open. 15 (6) e095815. doi:10.1136/bmjopen-2024-095815. ISSN 2044-6055. PMC 12142170. PMID 40461148.{{cite journal}}: CS1 maint: unflagged free DOI (link)
  45. ^ a b Ko, Eunjung; Wongvibul, Thanchanok; Rose, Karen M.; Jun, Jin (July 13, 2023). "The effects of self-guided interventions on stress, burden, and mental health in caregivers of people living with dementia: A systematic review". International Journal of Nursing Studies Advances. 5 100141. doi:10.1016/j.ijnsa.2023.100141. PMC 11080538. PMID 38746574.
  46. ^ Sánchez‐Alcón, Miriam; Sánchez‐Ramos, José Luis; Garrido‐Fernández, Almudena; Sosa‐Cordobés, Elena; Ortega‐Galán, Ángela María; Ramos‐Pichardo, Juan Diego (2023-10). "Effectiveness of interventions aimed at improving grief and depression in caregivers of people with dementia: A systematic review and meta‐analysis". International Journal of Mental Health Nursing. 32 (5): 1211–1224. doi:10.1111/inm.13142. hdl:10272/22148. ISSN 1445-8330. {{cite journal}}: Check date values in: |date= (help)
  47. ^ "Taking Care of Yourself: Tips for Caregivers". National Institute on Aging. October 12, 2023. Retrieved February 8, 2026.
  48. ^ 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.
  49. ^ a b "Respite Care". Alz.org. 2020.
  50. ^ a b 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.
  51. ^ 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.
  52. ^ 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.
  53. ^ Refolo, P; Raimondi, C; Masilla, SS (May 9, 2025). "Attitudes of physicians, nurses, and the general public toward End-of-Life (EoL) decisions in European countries: an umbrella review". BMC medical ethics. 26 (1): 60. doi:10.1186/s12910-025-01219-z. hdl:10807/313740. PMID 40346520.
  54. ^ a b c 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". Alzheimer's & Dementia. 19 (8): 3688–3700. doi:10.1002/alz.13094. ISSN 1552-5279. PMID 37186445.
  55. ^ Rajkumar, Ravi Philip (December 22, 2021). "Physician-Assisted Suicide in Dementia: Paradoxes, Pitfalls and the Need for Prudence". Frontiers in Sociology. 6 815233. doi:10.3389/fsoc.2021.815233. ISSN 2297-7775. PMC 8727695. PMID 35004941.
  56. ^ CDC (February 14, 2025). "Caregiving Among Women 2021-2022". Alzheimer's Disease and Healthy Aging Data. Retrieved November 25, 2025.
  57. ^ 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.
  58. ^ "2023 Alzheimer's disease facts and figures". Alzheimer's & Dementia. 19 (4): 1598–1695. 2023. doi:10.1002/alz.13016. ISSN 1552-5279.
  59. ^ MetLife Mature Market Institute (August 2006). "The MetLife Study of Alzheimer's Disease: The Caregiving Experience" (PDF). Archived from the original (PDF) on June 25, 2008. Retrieved February 12, 2008.
  60. ^ AARP & National Alliance for Caregiving. "Caregiving in the US 2025". AARP. Retrieved November 24, 2025.
  61. ^ a b c 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.
  62. ^ a b 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.
  63. ^ a b Alzheimer's Association (March 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.
  64. ^ 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.
  65. ^ 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.

Further reading

Wikiversity has learning resources about Caregiving and dementia
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