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As populations age, caring for people with dementia has become more common. Elderly care giving 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, but more often from spouses, adult children, and other relatives. In most mild to medium cases of dementia, the caregiver is a family member, usually a spouse or an adult child. Over 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 that case management can improve care for individuals with dementia and the experience of their caregivers. Furthermore, case management may reduce overall cost and institutional care in the medium term. Millions of people living in the United States take care of a friend or family member with Alzheimer’s disease or a related dementia.
The role of family caregivers has become more prevalent; care in the familiar surroundings of home may delay onset of some symptoms and postpone or eliminate the need for more professional and costly levels of care. Home-based care may entail tremendous economic, emotional costs as well. 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, who frequently 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.
Caregivers are themselves subject to increased incidence of depression, anxiety, and, in some cases, physical health issues. According to a UK-based study, almost two out of three carers of people with dementia feel lonely. Most of the carers in the study were family members of friends.
Research shows that African Americans face a more significant burden in Alzheimer’s care management and will face more negative life changes and health outcomes due to providing care. African Americans are twice as likely to be diagnosed with dementia than other ethnic groups, and caregivers often materialize as secondary patients due to the severe impact of caregiving on health and well-being. 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. This data emphasizes that African Americans are disproportionately affected by Alzheimer’s disease and other dementias; therefore, understanding caregivers’ subjective stress is urgent.
Schulz et al. concluded in a US study that "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." 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 carers for dementia, stroke and Parkinson's disease patients. In a Japanese study, Hirono et al. assessed that "the patients' functional and neuropsychiatric impairments were the main patient factors which increased the caregiver's burden." Activities are important for the dementia patient because it keeps them cognitive functioning. The caregiver should aid them in their activities, but should not do it for them. 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."
Caregivers may experience anticipatory grief and ambiguous loss, and research shows that African American caregivers are less likely to seek help for grief and depression than their Caucasian counterparts. Furthermore, physiological changes such as increased cortisol levels, the body’s primary stress hormone, contribute to impaired cognitive function, perpetuating the problem of Alzheimer’s disease within the African American community since stress is a known causal.
While family caregivers often care for patients with dementia at home, they also provide a helpful function within nursing or residential aged care facilities. Findings from a 2021 systematic review found caregivers of these patients in nursing homes with dementia 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. Nurses should provide information to the caregiver on how to take care of the dementia patient so the caregiver does not neglect them.
Respite or day care
Caring for someone with dementia is accompanied by many emotional and physical challenges. Respite care is designed to give rest or relief to caregivers. A 2014 study did not report any benefits or detrimental effects from the use of these interventions. However, these results may be due to the lack of high quality studies in this field.
Now from a systematic review from 2016 there is information that respite services provided to families with a relative with dementia does give positive support and help reduce stress. It has also been found that those who use respite services provided by a nursing home or other facility have the possibility of the family member with dementia being moved into one of these places sooner than those who do not use this service, while early utilization of in-home help services may delay institutionalization.
Respite care benefits caregivers in ways such as providing time for relaxation, for socialization with others and for taking care of personal tasks. Caregivers need time for themselves, so they do not experience burnout. See also Caregiver stress and Memory and aging.
Respite care can take place in many different settings depending on the needs of those involved. It can be done in adult daycare facilities or at nursing homes that provide respite services. Many times another family member can also come into the home.
A 2010 review summarizes what is known about best practices for safe and stimulating environments for dementia. Architects in designs for aging in place can consider the relationship of the built environment to the functioning and well-being of seniors.
The environment that a person with dementia lives in is very important. Nurses should help to provide a healthy environment for people with dementia. A negative frustrated atmosphere from the nurses could lead to emotional neglect to the patients. Nursing home managers do not understand how to take care of their dementia patients either, which could lead to a chaotic and hostile environment. It should be conducive to relaxation, stimulating, and engaging. A 2014 cross sectional quantitative study showed that while the nurses were less stressed, so were the residents. Nurses who were working in a calm environment decreased stress levels. The environment in which those with dementia live should foster their ability to be a participant and not just an observer in their life and include opportunities for independence. Their environment should allow them to keep their identity. Including things that are personal to them and that serve as reminders of their identity are important and meaningful. This personal environment should also be a place where if needed they can have privacy. The areas should also be well lit with minimal items on the ground to reduce risks of falling or injury.
The environment where those with dementia eat their meals should be inviting and foster conversation and socialization. Items designed specifically to help individuals with dementia can also be helpful, such as industrial designer Sha Yao's tableware that both has the colorful and unique design that stimulate people with dementia and has other features that address cognitive, motor, and physical impairments that often arise.
Things to for people with dementia would be:
- 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.
Caring for someone with dementia is especially challenging due to the fact that dementia patients soon lose the ability to speak or otherwise communicate and seem unable to understand what's said to them. Since dementia patients have trouble communicating their needs, this can be frustrating for the nurse. Nurses may have a hard time making relationships with their dementia patients because of the communication barrier. How the dementia patient feels is based on their social interactions and they may feel neglected because of this barrier. Nurses feel pain and helpless when caring for a dementia patient. 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.
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. In the study by Ellis and Astell it was found that as researchers imitated the sounds and body language of the dementia patients, they engaged even more with the researcher. As each person is affected by dementia differently, a unique form of communication may need to be established. Nurses must use therapeutic communication while talking to patients. Therapeutic lying is a tool that nurses use to re ensure the patient that they are okay and it's used in situations that would not harm the patient in any way. Even though they may be nonverbal that does not always conclude they no longer wish to participate in the world around them.
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. One study found that objects are recalled significantly better in Alzheimer's patients if they were presented as birthday presents to AD patients.
A 2017, Cochrane Review highlighted the current lack of high-quality evidence to determine whether assistive technology effectively supports people with dementia to manage memory issues. Thus, it is not presently sure whether or not assistive technology is beneficial for memory problems.
A 2018, Cochrane Review found that offering personally tailored activity sessions to people with dementia in long-term care homes may help manage challenging behavior. No evidence supported the idea that activities were better if they matched the individual interests of people. The findings are based on low-certainty evidence from eight studies. At the same time a program showed that simple measures like talking to people about their interest 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.
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. 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. Pain is commonly defined as a subjective feeling that is best understood by the patient. Because of this, nurses tend to rely on verbal statements from patients to detect whether one is hurting. Due to diminished verbal skills in this population it can increase the risk of inadequately assessing ones' needs, including if they are in pain. Research has shown that patients not being able to express themselves is the number one barrier when it comes to caring for the elderly.
As the population continues to age, the numbers 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. Interpreting body language has been shown effective in relieving discomfort. Another way to improve perception of pain is getting 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. Although some of these pain-relieving strategies are beneficial there still is a lack of research focused on dementia patients in the acute care setting.Unfortunately many nurses are not taught on how to take care of patients with dementia. Many programs that nurses go through that are provided by their facilities, a little less than half of nurses do not feel comfortable actually using that training on their patients. As a result, this puts an increased risk of strain on nurses and patients.
In general, however, the unfamiliar environment and routinized 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. Whilst these challenges have long been recognized, it remains an ongoing issue, and has been further impacted by the COVID-19 pandemic. A person-centered care approach helps alleviate some of the unfamiliar stress from being in the acute care environment, and can also benefit those caring for people with dementia in this setting. Implementing best practice in dementia care needs a hospital wide approach. Increases to workforce capacity, physical environments that support familiarisation, social interaction and activities, inclusive carer policies and cultures of sharing knowledge have all shown promise in improving dementia care in the acute-care setting.
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. This can have a profound impact on the dignity and quality of life on people with dementia and their carers.
There is a general lack of understanding and stigma around incontinence. Professionals also lack knowledge and training when it comes to incontinence in people with dementia. Poorly-managed incontinence also has severe negative impact physically, psychologically, economically and socially on people with dementia living at home and their informal carers.
Guidelines suggest that treatment should always be preferred to containment as pads and catheterisation can be uncomfortable and negatively affect the person's dignity. However the continence problems of people with dementia are different than of those without and the care strategy should take their and their carers' different perspectives into account. There are guidelines for the continence care needs of people with complex health conditions such as the Continence Care Framework.
THE EVIDEM-C 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.
In care homes
Among people with dementia living in care homes the rates of fecal incontinence are between 30% and 50%. This generally occurs alongside urinary incontinence but around 30% of people in care homes have only urinary incontinence. 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. For supporting and encouraging toilet use, staff needs practical training and an understanding of how dementia affects continence.
In a hospital context, the care of continence is often poor. This can lead to worse clinical outcomes for people with dementia, a higher risk of infection and the development of urinary and fecal incontinence. After 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. 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 lead to undignified situations and the use of demeaning language.
- 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: CD008345. doi:10.1002/14651858.CD008345.pub2. PMC 6823260. PMID 25560977.
- "Tips for Caregivers and Families of People With Dementia | National Institute on Aging". www.nia.nih.gov. Retrieved 2022-10-03.
- [dead link]MetLife Mature Market Institute (August 2006). "The MetLife Study of Alzheimer's Disease: The Caregiving Experience" (PDF). Archived from the original (PDF) on 2008-06-25. Retrieved 2008-02-12.
- Schulz R, O'Brien AT, Bookwala J, Fleissner K (December 1995). "Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes". The Gerontologist. 35 (6): 771–791. doi:10.1093/geront/35.6.771. PMID 8557205.
- Cooper C, Balamurali TB, Livingston G (April 2007). "A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia". International Psychogeriatrics. 19 (2): 175–195. doi:10.1017/S1041610206004297. PMID 17005068. S2CID 23104276.
- 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.
- "Most people caring for relatives with dementia experience loneliness". NIHR Evidence (Plain English summary). 2020-07-22. doi:10.3310/alert_40575. S2CID 243269845.
- 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. PMID 32306759. S2CID 216028843.
- 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. PMID 26953236. S2CID 31137751.
- 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.
- Alzheimer's Association (Mar 2012). "2012 Alzheimer's disease facts and figures". Alzheimer's & Dementia. 8 (2): 131–168. doi:10.1016/j.jalz.2012.02.001. PMID 22404854. S2CID 202255258.
- Schulz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A, Zhang S (August 2004). "Long-term care placement of dementia patients and caregiver health and well-being". JAMA. 292 (8): 961–967. doi:10.1001/jama.292.8.961. PMID 15328328.
- Thommessen B, Aarsland D, Braekhus A, Oksengaard AR, Engedal K, Laake K (January 2002). "The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease". International Journal of Geriatric Psychiatry. 17 (1): 78–84. doi:10.1002/gps.524. PMID 11802235. S2CID 23155635.
- Hirono N, Kobayashi H, Mori E (June 1998). "[Caregiver burden in dementia: evaluation with a Japanese version of the Zarit caregiver burden interview]". No to Shinkei = Brain and Nerve (in Japanese). 50 (6): 561–567. PMID 9656252.
- Ławnik, Anna; Sakowicz, Diana (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.
- Marvardi M, Mattioli P, Spazzafumo L, Mastriforti R, Rinaldi P, Polidori MC, et al. (February 2005). "The Caregiver Burden Inventory in evaluating the burden of caregivers of elderly demented patients: results from a multicenter study". Aging Clinical and Experimental Research. 17 (1): 46–53. doi:10.1007/bf03337720. PMID 15847122. S2CID 24250124.
- Meuser TM, Marwit SJ (October 2001). "A comprehensive, stage-sensitive model of grief in dementia caregiving". The Gerontologist. 41 (5): 658–670. doi:10.1093/geront/41.5.658. PMID 11574711.
- Frank JB (December 2007 – January 2008). "Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis". American Journal of Alzheimer's Disease and Other Dementias. 22 (6): 516–527. doi:10.1177/1533317507307787. PMID 18166611. S2CID 25646456.
- Timmermann Sandra (September 2004). "Ronald Reagan, grief and bereavement: what we need to know about the grieving process" (PDF). Journal of Financial Service Professionals. Archived from the original (PDF) on 2009-04-11. Retrieved 2008-03-02.
- Ouanes S, Popp J (2019). "High Cortisol and the Risk of Dementia and Alzheimer's Disease: A Review of the Literature". Frontiers in Aging Neuroscience. 11: 43. doi:10.3389/fnagi.2019.00043. PMC 6405479. PMID 30881301.
- 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.
- 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.
- 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. PMID 24435941.
- 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.
- 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.
- "Respite Care". Alz.org. 2020.
- 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.
- 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.
- Yaghmour, Sara Mahmoud (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. ISSN 2054-1058.
- 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.
- Brownlee J (2015-08-19). "Fun, Colorful Tableware Designed For Alzheimer's Patients". Fast Company. Retrieved 2021-03-10.
- "Highlights from Designed in California". SFMOMA. Retrieved 2021-03-10.
- Scott C (2015-09-03). "Tableware designed for Alzheimer's patients". CNN. Archived from the original on 2015-09-05. Retrieved 2021-03-10.
- "Alzheimer's Disease Symptoms". CaringKindNYC.org. Caring Kind. 30 November 2015. Retrieved 18 September 2017.
- Norbergh, Karl-Gustaf; Helin, Yvonne; Dahl, Annika; Hellzén, Ove; Asplund, Kenneth (May 2006). "Nurses' Attitudes Towards People with Dementia: the semantic differential technique". Nursing Ethics. 13 (3): 264–274. doi:10.1191/0969733006ne863oa. ISSN 0969-7330.
- 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.
- 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.
- 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.
- Kazui H, Mori E, Hashimoto M, Hirono N, Imamura T, Tanimukai S, et al. (October 2000). "Impact of emotion on memory. Controlled study of the influence of emotionally charged material on declarative memory in Alzheimer's disease". The British Journal of Psychiatry. 177 (4): 343–347. doi:10.1192/bjp.177.4.343. PMID 11116776.
- Moayeri SE, Cahill L, Jin Y, Potkin SG (March 2000). "Relative sparing of emotionally influenced memory in Alzheimer's disease". NeuroReport. 11 (4): 653–655. doi:10.1097/00001756-200003200-00001. PMID 10757495. S2CID 36894321.
- Boller F, El Massioui F, Devouche E, Traykov L, Pomati S, Starkstein SE (2002). "Processing emotional information in Alzheimer's disease: effects on memory performance and neurophysiological correlates". Dementia and Geriatric Cognitive Disorders. 14 (2): 104–112. doi:10.1159/000064932. PMID 12145458. S2CID 31468228.
- Satler C, Garrido LM, Sarmiento EP, Leme S, Conde C, Tomaz C (December 2007). "Emotional arousal enhances declarative memory in patients with Alzheimer's disease". Acta Neurologica Scandinavica. 116 (6): 355–360. doi:10.1111/j.1600-0404.2007.00897.x. PMID 17986092. S2CID 18207073.
- Sundstrøm M (July 2011). "Modeling recall memory for emotional objects in Alzheimer's disease". Neuropsychology, Development, and Cognition. Section B, Aging, Neuropsychology and Cognition. 18 (4): 396–413. doi:10.1080/13825585.2011.567324. PMID 21728888. S2CID 3245332.
- 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.
- Möhler R, Renom A, Renom H, Meyer G (February 2018). "Personally tailored activities for improving psychosocial outcomes for people with dementia in long-term care". The Cochrane Database of Systematic Reviews. 2018 (2): CD009812. doi:10.1002/14651858.cd009812.pub2. PMC 6491165. PMID 29438597.
- "The WHELD programme for people with dementia helps care home staff deliver person-centred care". NIHR Evidence (Plain English summary). 2020-11-26. doi:10.3310/alert_42713. S2CID 240719455.
- Ballard C, Orrell M, Moniz-Cook E, Woods RT, Whitaker R, Corbett A, 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. S2CID 225489651.
- Rantala M, Kankkunen P, Kvist T, Hartikainen S (March 2014). "Barriers to postoperative pain management in hip fracture patients with dementia as evaluated by nursing staff". Pain Management Nursing. 15 (1): 208–219. doi:10.1016/j.pmn.2012.08.007. PMID 24602437.
- 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.
- 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.
- Surr CA, Parveen S, Smith SJ, Drury M, Sass C, Burden S, Oyebode J (June 2020). "The barriers and facilitators to implementing dementia education and training in health and social care services: a mixed-methods study". BMC Health Services Research. 20 (1): 512. doi:10.1186/s12913-020-05382-4. PMC 7275489. PMID 32503536.
- 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.
- 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.
- Gwernan-Jones R, Lourida I, Abbott RA, Rogers M, Green C, Ball S, et al. (2020-11-23). "Understanding and improving experiences of care in hospital for people living with dementia, their carers and staff: three systematic reviews". Health Services and Delivery Research. 8 (43): 1–248. doi:10.3310/hsdr08430. PMID 33237687. S2CID 229498422.
- Gwernan-Jones R, Abbott R, Lourida I, Rogers M, Green C, Ball S, et al. (December 2020). "The experiences of hospital staff who provide care for people living with dementia: A systematic review and synthesis of qualitative studies". International Journal of Older People Nursing. 15 (4): e12325. doi:10.1111/opn.12325. PMID 32412167. S2CID 218649147.
- 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.
- Royal College of Nursing (2011). "Commitment to the care of people with dementia in general hospitals (SPACE principles)" (PDF).
- Imison C, Kwint J (21 June 2022). "Continence, dementia, and care that preserves dignity". NIHR Evidence. doi:10.3310/nihrevidence_51255. S2CID 251785991.
- 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.
- 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.
- "My bladder and bowel own my life." A collaborative workshop addressing the need for continence research (PDF). Age UK. 2018.
- 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.
- 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.
- Ostaszkiewicz J (23 April 2017). "Reframing continence care in care-dependence". Geriatric Nursing. 38 (6): 520–526. doi:10.1016/j.gerinurse.2017.03.014. PMID 28442175. S2CID 26282369.
- Drennan VM, Manthorpe J, Ilifffe S (2017-01-01). "Meeting the needs of older people living at home with dementia who have problems with continence". Quality in Ageing and Older Adults. 18 (4): 246–253. doi:10.1108/QAOA-06-2017-0020. ISSN 1471-7794.
- 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.
- Russell B, Buswell M, Norton C, Malone JR, Harari D, Harwood R, et al. (March 2017). "Supporting people living with dementia and faecal incontinence" (PDF). British Journal of Community Nursing. 22 (3): 110–114. doi:10.12968/bjcn.2017.22.3.110. PMID 28252330. S2CID 30556904.
- 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.
- 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.
- Featherstone K, Northcott A, Boddington P, Edwards D, Vougioukalou S, Bale S, et al. (June 2022). "Understanding approaches to continence care for people living with dementia in acute hospital settings: an ethnographic study". Health and Social Care Delivery Research. 10 (14): 1–142. doi:10.3310/QUVV2680. PMID 35737814. S2CID 249937028.
- Next Step in Care: free, downloadable resources for family caregivers and health care providers
- Levine C, ed. (2004). Always On Call: When Illness Turns Families into Caregivers (2nd ed.). Vanderbilt University Press for the United Hospital Fund. ISBN 978-0-8265-1461-5.
- Joyce C (2006). Hidden Carers. Edinburgh: Dunedin Press. ISBN 978-1-903765-66-1.
- "Investigating Caregivers' Attitudes and Needs (I CAN) Survey". Alzheimer's Foundation of America. Archived from the original on 2006-06-18.
- "Investigating Caregivers' Attitudes and Needs (I CAN 2) Survey". Alzheimer's Foundation of America. Archived from the original on 2007-10-27. Retrieved 2008-02-26.
- "The MetLife Market Survey of Adult Day Services & Home Care Costs" (PDF). MetLife. September 2007. Archived from the original (PDF) on 2008-05-09. Retrieved 2008-02-27.
- Mace NL, Rabins PV (2006). The 36-Hour Day (4th ed.). Baltimore: Johns Hopkins University Press. pp. 324. ISBN 978-0-8018-8509-9.
- Caring for a Person with Alzheimer's Disease: Your Easy-to-Use Guide from the National Institute on Aging. US Department of Health and Human Services, National Institute on Aging, National Institutes of Health. 2009.
- "Living With Alzheimer's Disease". Visiting Nurse Service of New York. Retrieved 2011-03-30.
- "Effective Communication with Alzheimer's Patients". Care Communities. Archived from the original on 2013-02-22. Retrieved 2011-08-09.
- Norbergh, K.-G., Helin, Y., Dahl, A., Hellzén, O., & Asplund, K. (2006). Nurses’ Attitudes Towards People with Dementia: the semantic differential technique. Nursing Ethics, 13(3), 264–274. https://doi.org/10.1191/0969733006ne863oa