Caring for people with dementia

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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, but more often from spouses, adult children and other relatives. In most mild to medium cases of dementia the primary caregiver is a family member, usually a spouse or adult child. Over 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. Architects in designs for aging in place can consider the relationship of the built environment to the functioning and well-being of seniors.[1][2]

Family Caregivers[edit]

The role of family caregivers has also become more prominent, as 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 survey of patients with long-term care insurance, the direct and indirect costs of caring for an Alzheimer's disease patient averaged $77,500 per year in the United States.[3] Caregivers are themselves subject to increased incidence of depression, anxiety, and, in some cases, physical health issues.[4][5][6]

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."[7] 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.[8] 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."[9] 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."[10] Caregivers may experience anticipatory grief and ambiguous loss.[11][12][13]

Respite or day care[edit]

Caring for someone with dementia is accompanied by many emotional and physical challenges.[14] Respite care is designed to give rest or relief to caregivers. A 2014 did not report any benefits or detrimental effects from the use of these interventions.[14] However, these results may be due to the lack of high quality studies in this field.[14]

Early utilization of in-home help services may delay institutionalization.[15]

Environmental design[edit]

A 2010 review summarizes what is known about best practices for safe and stimulating environments for dementia.[16]


Caring for someone with dementia is especially challenging due to the fact that dementia patents soon lose the ability to speak or otherwise communicate and seem unable to understand what's said to them.[17] 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.[18]

Comfort Matters, a program developed by a team of geriatric nurses in Phoenix Arizona, is one program of patient-centered care techniques that has received positive results.[19][20] Caregivers who learn Comfort Matters techniques are trained to read all behaviors of a dementia patient—e.g., yelling, resisting care, resisting going to bed or getting up—as forms of communication in which the patient is attempting to express discomfort, anxiety or other special needs. Once the caregiver deciphers what is meant by the behavior and address the patent's needs, the disruptive behavior ceases.[21] Many of the principles used by Comfort Matters and other patient-centered care programs were inspired by the writing of Tom Kitwood, particularly his book, Dementia Reconsidered -- The person come first.[20]

The Nursing Role[edit]

In the acute care setting a far number of individuals diagnosed with dementia suffer from hip fractures. For that reason, nurses are in high demand to care for this population.[22] When taking care of the elderly who are cognitively impaired it is challenging to assess if one is experiencing pain. 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. [23] Due to verbal skills mostly diminished 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 the theory of common sense to aid in assessments. [22] 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 member’s eyes. Obtaining further information about the patient from family members helps make the connection to normal behaviors. [23] Although some of these strategies are beneficial there still is a lack of research focused on dementia patients in the acute care setting. As a result, this puts an increased risk of strain on nurses and patients’. 

See also[edit]


  1. ^ "Esther Greenhouse Universal Design Aging in Place CAPS | Esther Greenhouse". Retrieved 2017-03-30. 
  2. ^ Watch now: WCNY Series | Design For A Lifetime #101 | WCNY Public Media Video, retrieved 2017-03-30 
  3. ^ MetLife Mature Market Institute (August 2006). "The MetLife Study of Alzheimer's Disease: The Caregiving Experience" (PDF). Archived from the original (PDF) on 2008-06-25. Retrieved 2008-02-12. 
  4. ^ Schulz R, O'Brien AT, Bookwala J, Fleissner K (December 1995). "Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes". Gerontologist. 35 (6): 771–791. doi:10.1093/geront/35.6.771. PMID 8557205. 
  5. ^ Cooper C, Balamurali TB, Livingston G (28 September 2006). "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. 
  6. ^ Adams KB (June 2008). "Specific effects of caring for a spouse with dementia: differences in depressive symptoms between caregiver and non-caregiver spouses". Journal of International Psychogeriatrics. 20 (3): 508–20. doi:10.1017/S1041610207006278. PMID 17937825. 
  7. ^ Schulz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A, Zhang S (2004-08-25). "Long-term care placement of dementia patients and caregiver health and well-being". Journal of the American Medical Association. 292 (8): 961–967. doi:10.1001/jama.292.8.961. PMID 15328328. 
  8. ^ 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. 
  9. ^ 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 (in Japanese). 50 (6): 561–567. PMID 9656252. 
  10. ^ Marvardi M, Mattioli P, Spazzafumo L, 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. 
  11. ^ Meuser TM, Marwit SJ (October 2001). "A comprehensive, stage-sensitive model of grief in dementia caregiving". Gerontologist. 41 (5): 658–670. doi:10.1093/geront/41.5.658. PMID 11574711. 
  12. ^ Frank JB (December 2007 – January 2008). "Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis". Am J Alzheimers Dis Other Demen. 22 (6): 516–527. doi:10.1177/1533317507307787. PMID 18166611. 
  13. ^ Timmermann Sandra (September 2004). "Ronald Reagan, grief and bereavement: what we need to know about the grieving process" (PDF). Journal of Financial Service Professionals. Retrieved 2008-03-02. 
  14. ^ a b c Maayan, Nicola; Soares-Weiser, Karla; Lee, Helen (2014-01-16). "Respite care for people with dementia and their carers". The Cochrane Database of Systematic Reviews (1): CD004396. doi:10.1002/14651858.CD004396.pub3. ISSN 1469-493X. PMID 24435941. 
  15. ^ Gaugler JE, Kane RL, Kane RA, Newcomer R (April 2005). "Early community-based service utilization and its effects on institutionalization in dementia caregiving". Gerontologist. 45 (2): 177–185. doi:10.1093/geront/45.2.177. PMID 15799982. 
  16. ^ Fleming, R; Purandare, N (November 2010). "Long-term care for people with dementia: environmental design guidelines". International psychogeriatrics / IPA. 22 (7): 1084–96. doi:10.1017/S1041610210000438. PMID 20478095. 
  17. ^ "Alzheimer's Disease Symptoms". Caring Kind. Retrieved 18 September 2017. 
  18. ^ Rickert, James (January 24, 2012). "Patient-centered care and how to get there". Health Affairs. Project HOPE: The People-to-People Health Foundation, Inc.,. Retrieved 18 September 2017. 
  19. ^ Belluck, Pam (December 31, 2010). "Giving Alzheimer's Patients Their Way, Even Chocolate". New York Times. Retrieved 18 September 2017. Dementia patients at Beatitudes are allowed practically anything that brings comfort 
  20. ^ a b Mead, Rebecca (May 20, 2013). "The Sense of an Ending". Conde Nast. Retrieved 18 September 2017. Beatitudes tries to provide residents with pleasurable moments throughout the day. 
  21. ^ Chicotel, Tony; Alonzo, Tena. "Dementia Care Without Drugs: A Better Approach". Youtube. Retrieved 18 September 2017. 
  22. ^ a b  Rantala, Maija; Kankkunen, Päivi; Kvist, Tarja; Hartikainen, Sirpa. "Barriers to Postoperative Pain Management in Hip Fracture Patients with Dementia as Evaluated by Nursing Staff"Pain Management Nursing15 (1): 208–219. doi:10.1016/j.pmn.2012.08.007.
  23. ^ a b  Brorson, Hanna; Plymoth, Henrietta; Örmon, Karin; Bolmsjö, Ingrid. "Pain Relief at the End of Life: Nurses' Experiences Regarding End-of-Life Pain Relief in Patients with Dementia"Pain Management Nursing15 (1): 315–323. doi:10.1016/j.pmn.2012.10.005.

Further reading[edit]