Mild Cognitive Impairment and Caregiver Burden: A Critical Review and Research Agenda
Public Health Reviewsvolume 34, Article number: 16 (2012)
Aging is a global phenomenon that is accompanied by an increase in the number of persons with non-communicable diseases including dementia. Since this development requires public health attention to meet the needs of the increasing numbers of elderly persons and their caregivers, scientific and clinical research in the area of dementia and cognitive disorders during the last decade has shifted to focus on the early diagnosis of the disease and, more specifically, on mild cognitive impairment (MCI). MCI is associated with severe consequences at the societal, individual and familial levels. However, compared to the wealth of studies in the area of caregiver burden and Alzheimer’s disease, research in the area of MCI and caregiver burden is still developing. The aim of the present paper was to provide an analysis of the status of research regarding caregiver burden in MCI. This review indicated that despite important advances, gaps in the knowledge and understanding of caregiver burden in MCI remain. Only a clear delineation of the uniqueness of the concept of burden of care in MCI, accompanied by methodologically rigorous studies, will inform the development of interventions geared to reduce the burden of family members of persons with MCI.
Gainotti G. Origins, controversies and recent developments of the MCI construct. Curr Alzheimer Res. 2010;7:271–9.
Olzaren J, Torrero P, Cruz I, Aparicio E, Sanz A, Mula N, et al. Mild cognitive impairment and dementia in primary care: the value of medical history. Fam Pract. 2011;28:385–92.
Werner P, Korczyn AD. Mild cognitive impairment: conceptual assessment, ethical, and social issues. Clin Interv Aging. 2008;3:413–20.
Frank AR, Petersen RC. Mild cognitive impairment. In: Handbook of clinical neurology. Duyckaerts C, Litvan I, (editors). Elsevier Health Sciences; 2008.
Pater C. Mild cognitive impairment (MCI)–the novel trend of targeting Alzheimer’s disease in its early stages–methodological considerations. Curr Alzheimer Res. 2011;8:798–807.
Luppa M, Heinrich S, Matschinger H, Hensel A, Luck T, Riedel-Heller SG, Konig HH. Direct costs associated with mild cognitive impairment in primary care. Int J Geriatr Psychiatry. 2008;23:963–71.
Austrom M, Lu Y. Long term caregiving: helping families of persons with mild cognitive impairment cope. Curr Alzheimer Res. 2009;6:392–8.
Dean K, Wilcock G. Living with mild cognitive impairment: the patient’s and carer’s experience. Int Psychogeriatr. 2012;17:1–11.
Frank L, Lloyd A, Flynn JA, Kleinman L, Matza LS, Margolis MK, et al. Impact of cognitive impairment on mild dementia patients and mild cognitive impairment patients and their informants. Int Psychogeriatr. 2006; 18: 151–62.
Joosten-Weyn Banningh L, Vernooij-Dassen M, Olde Rikkert M, Teunisse JP. Mild cognitive impairment: coping with an uncertain label. Int J Geriatr Psychiatry. 2008;23:148–54.
Lingler JH, Nightingale MC, Erlen JA, Kane AL, Reynolds III, CF, Schulz R, DeKosky ST. Making sense of Mild Cognitive Impairment: a qualitative exploration of the patient’s esperience. Gerontologist. 2006;46:791–800.
Brataas HV, Bjugan H, Wille T, Hellzen O. Experiences of day care and collaboration among people with mild dementia. J Clin Nurs. 2010;19:2839–48.
Lu YYF, Haase JE. Content validity and acceptability of the Daily Enhancement of Meaningful Activity Program: intervention for mild cognitive impairment patient-spouse dyads. J Neurosci Nurs. 2011;43:317–38.
Lu YF, Austrom MG, Perkins SM, Bakas T, Farlow MR, He F, et al. Depressed mood in informal caregivers of individuals with mild cognitive impairment. Am J Alzheimers Dis Other Demen. 2007;22:273–85.
Davies HD, Newkirk LA, Pitts CB, Coughlin CA, Sridhar SB, Zeiss L, Zeiss AM. The impact of dementia and mild memory impairment (MMI) on intimacy and sexuality in spousal relationships. Int Psychogeriatr. 2010;22:618–28.
Garand L, Dew MA, Urda B, Hagerty Lingler J, DeKosky ST Reynolds III CF. Marital quality in the context of mild cognitive impairment. West J Nurs Res. 2007;29:976–92.
Garand L, Dew MA, Urda B, Lingler JH, Dekosky ST, Reynolds CF. Caregiving burden and psychiatric morbidity in spouses of persons with mild cognitive impairment. Int J Geriatr Psychiatry.2005; 20: 512–22.
Savla J, Roberto KA, Blieszner R, Cox M, Gwazdauskas F. Effects of daily stressors on the psychological and biological well-being of spouses of persons with mild cognitive impairment. J Gerontol B Psychol Sci Soc Sci. 2011;66:653–64.
Etters L, Goodall D, Harrison B. Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract. 2008;20:423–8.
Pearlin LI, Mullan JT, Sample SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990;30:583–94.
Pinquart M, Sörensen S. Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. Gerontologist. 2005;45:90–106.
Campbell P, Wright J, Oyebode J, Job D, Crome P, Bentham P, et al. Determinants of burden in those who care for someone with dementia. Int J Geriatr Psychiatry. 2008;23:1078–85.
Carretero S, Garcés J, Ródenas F, Sanjosé V. The informal caregiver’s burden of dependent people: theory and empirical review. Arch gerontol geriatr. 2009; 491:74–9.
Reisberg B, Ferris SH, de Leon MJ, Franssen ESE, Kluger, A, Mi P, et al. Stage-specific behavioral, cognitive, and in vivo changes in community residing subjects with age-associated memory impairment and primary degenerative dementia of the Alzheimer type. Drug Develop Resear. 1998;15:101–14.
Ellison JM. A 60-year-old woman with mild memory impairment: review of mild cognitive impairment. JAMA. 2008;300:1566–74.
Portet F, Ousset PJ, Visser PJ, Frisoni GB, Nobili F, Scheltens P, et al. Mild cognitive impairment (MCI) in medical practice: a critical review of the concept and new diagnostic procedure. Report of the MCI Working Group of the European Consortium on Alzheimer’s Disease. J Neurol Neurosurg Psychiatry. 2006;77:714–8.
Ward A, Arrighi HM, Michels S, Cedarbaum JM. Mild cognitive impairment: disparity of incidence and prevalence estimates. Alzheimer Dement. 2012; 8:14–21.
Neugroschl J, Wang S. Alzheimer’s disease: diagnosis and treatment across the spectrum of disease severity. Mt Sinai J Med. 2011;78:596–612.
Petersen RC, Knopman DS, Boeve BF, Geda YE, Ivnik RJ, Smith GE, et al. Mild cognitive impairment: ten years later. Arch Neurol. 2009;66:1447–55.
Ganguli M, Chang CC, Snitz BE, Saxton JA, Vanderbilt J, Lee CW. Prevalence of mild cognitive impairment by multiple classifications: The Mongongahela-Youghiogheny Healthy Aging Team (MYHAT) project. Am J Geriatr Psychiatry. 2010;18:674–83.
Petersen RC, Roberts RO, Knopman DS, Geda, YE, Cha RH, Pankratz VS, et al. Prevalence of mild cognitive impairment is higher in men: The Mayo Clinic Study of Aging. Neurology. 2010;75:889–97.
Yesavage J A, O’Hara R, Kraemer H, Taylor JL, Ferris S, Gely-Nargeot M, et al. Modeling the prevalence and incidence of Alzheimer’s disease and mild cognitive impairment. J Psychiatr Res. 2002;36:281–6.
Luck T, Luppa M, Briel S, Riedel-Heller SG. Incidence of mild cognitive impairment: a systematic review. Dement Geriatr Cogn Disord. 2010;29:164–75.
Adams KB. The transition to caregiving. J Gerontol Soc Work. 2006;47:3–29.
Wolfs CA, Kessels A, Severens JL, Brouwer W, de Vugt ME, Verhey FR, Dirksen CD. Predictive factors for the objective burden of informal care in people with dementia: a systematic review. Alzheimer Dis Assoc Disord. 2012;26:197–204.
Hilgeman MM, Allen RS, DeCoster J, Burgio LD. Positive aspects of caregiving as a moderator of treatment outcome over 12 months. Psychol Aging. 2007;22:361–71.
McLennon SM, Habermann B, Rice M. Finding meaning as a mediator of burden on the health of caregivers of spouses with dementia. Aging Ment Health. 2011;15:522–30.
Blieszner R, Roberto KA. Care partner responses to the onset of mild cognitive impairment. Gerontologist. 2010;50:11–22.
Bruce JM, McQuiggan M, Williams V, Westervelt H, Tremont G. Burden among spousal and child caregivers of patients with mild cognitive impairment. Dement Geriatr Cogn Disord. 2008;25:385–90.
Gallagher D, Mhaolain AN, Crosby L, Ryan D, Lacey L, Coen RF, et al. Dependence and caregiver burden in Alzheimer’s disease and mild cognitive impairment. Am J Alzheimers Dis Other Demen. 2011;26:110–4.
Fisher GG, Franks MM, Plassman BL, Brown SL, Potter GG, Lleweylln D, et al. Caring for individuals with dementia and cognitive impairment, not dementia: findings from the Aging, Demographics, and Memory Study. J Am Geriatr Soc. 2011;59:488–94.
Kuo LM, Shyu YIL. Process of ambivalent normalisation: experience of family caregivers of elders with mild cognitive impairment in Taiwan. J Clin Nurs. 2010;19:3477–84.
World Health Organization. Dementia: a public health priority. UK: WHO Library; 2012.
Martin Y, Gilbert P, Mcewan K, Irons C. The relation of entrapment, shame and guilt to depression in carers of people with dementia. Aging Mental Health. 2006;10,101–6.
Bedard M, Molloy DW, Squire L, Dubois S, Lever JA, O’Donnell M. The Zarit Burden Interview: a new short version and screening version. Gerontologist. 2001;41:652–7.
Schulz R, Beach SR. Caregiving as a risk factor for mortality: The Caregiver Health Effects study. JAMA. 1999;282:2215–9.
Montgomery RJV, Gonyea JG, Hooyman NR. Caregiving and the experience of subjective and objective burden. Fam Relations. 1985;34:19–26.
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20,649–55.