How Are We Going to Live with Alzheimer's Disease?

Overview

Journal Health Aff (Millwood)

Specialty Health Services

Date 2014 Apr 9

PMID 24711312

Citations 3

Authors

Jason Karlawish

Affiliations

Soon will be listed here.

Abstract

Alzheimer's disease confronts us with an ethical challenge: How do we live with dignity and quality of life in the face of progressive disability and, ultimately, death? Patients' cognitive and decision-making impairments often make them unable to answer this question, and when professionals who provide services for older adults fail to recognize and accommodate these impairments, patients suffer. Patients and their caregivers need a health care system that fosters caregiving so that each will live with dignity and well-being. Another way to answer this question is to discover treatments that prevent disabling cognitive impairments, but this strategy will require expanding the Alzheimer's label to include people who do not have dementia or who are even cognitively normal. Controversies are likely to occur over how best to describe the Alzheimer's problem, measure the value of early diagnosis and treatment, and live with a brain at risk.

Citing Articles

Exploring the potential of vagus nerve stimulation in treating brain diseases: a review of immunologic benefits and neuroprotective efficacy.

Jin Z, Dong J, Wang Y, Liu Y Eur J Med Res. 2023; 28(1):444.

PMID: 37853458 PMC: 10585738. DOI: 10.1186/s40001-023-01439-2.

Plasma 24-metabolite Panel Predicts Preclinical Transition to Clinical Stages of Alzheimer's Disease.

Fiandaca M, Zhong X, Cheema A, Orquiza M, Chidambaram S, Tan M Front Neurol. 2015; 6:237.

PMID: 26617567 PMC: 4642213. DOI: 10.3389/fneur.2015.00237.

The Paradox of Scarcity in a Land of Plenty: Meeting the Needs of Older Adults with Mental Health and Substance Use Disorders.

Bartels S, Pepin R, Gill L Generations. 2015; 38(3):6-13.

PMID: 25663741 PMC: 4316367.

References

Albert M, DeKosky S, Dickson D, Dubois B, Feldman H, Fox N . The diagnosis of mild cognitive impairment due to Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011; 7(3):270-9. PMC: 3312027. DOI: 10.1016/j.jalz.2011.03.008. View

Kiyak H, Teri L, Borson S . Physical and functional health assessment in normal aging and in Alzheimer's disease: self-reports vs family reports. Gerontologist. 1994; 34(3):324-30. DOI: 10.1093/geront/34.3.324. View

Lai J, Gill T, Cooney L, Bradley E, Hawkins K, Karlawish J . Everyday decision-making ability in older persons with cognitive impairment. Am J Geriatr Psychiatry. 2008; 16(8):693-6. PMC: 2730037. DOI: 10.1097/JGP.0b013e31816c7b54. View

Karlawish J . Addressing the ethical, policy, and social challenges of preclinical Alzheimer disease. Neurology. 2011; 77(15):1487-93. PMC: 4561233. DOI: 10.1212/WNL.0b013e318232ac1a. View

Sperling R, Aisen P, Beckett L, Bennett D, Craft S, Fagan A . Toward defining the preclinical stages of Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011; 7(3):280-92. PMC: 3220946. DOI: 10.1016/j.jalz.2011.03.003. View

Sarkar U, Bates D . Care partners and online patient portals. JAMA. 2014; 311(4):357-8. DOI: 10.1001/jama.2013.285825. View

Hirschman K, Xie S, Feudtner C, Karlawish J . How does an Alzheimer's disease patient's role in medical decision making change over time?. J Geriatr Psychiatry Neurol. 2004; 17(2):55-60. DOI: 10.1177/0891988704264540. View

McKhann G . Changing concepts of Alzheimer disease. JAMA. 2011; 305(23):2458-9. DOI: 10.1001/jama.2011.810. View

Kleinman A . Caregiving as moral experience. Lancet. 2012; 380(9853):1550-1. DOI: 10.1016/s0140-6736(12)61870-4. View

10.

Jack Jr C, Albert M, Knopman D, McKhann G, Sperling R, Carrillo M . Introduction to the recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011; 7(3):257-62. PMC: 3096735. DOI: 10.1016/j.jalz.2011.03.004. View

11.

Pinquart M, Sorensen S . Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003; 18(2):250-67. DOI: 10.1037/0882-7974.18.2.250. View

12.

Weiner M, Aisen P, Jack Jr C, Jagust W, Trojanowski J, Shaw L . The Alzheimer's disease neuroimaging initiative: progress report and future plans. Alzheimers Dement. 2010; 6(3):202-11.e7. PMC: 2927112. DOI: 10.1016/j.jalz.2010.03.007. View

13.

Sabatino C . Damage prevention and control for financial incapacity. JAMA. 2011; 305(7):707-8. DOI: 10.1001/jama.2011.187. View

14.

Lai J, Karlawish J . Assessing the capacity to make everyday decisions: a guide for clinicians and an agenda for future research. Am J Geriatr Psychiatry. 2007; 15(2):101-11. DOI: 10.1097/01.JGP.0000239246.10056.2e. View

15.

Mitchell S, Miller S, Teno J, Kiely D, Davis R, Shaffer M . Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines. JAMA. 2010; 304(17):1929-35. PMC: 3017367. DOI: 10.1001/jama.2010.1572. View

16.

Dubois B, Feldman H, Jacova C, Cummings J, DeKosky S, Barberger-Gateau P . Revising the definition of Alzheimer's disease: a new lexicon. Lancet Neurol. 2010; 9(11):1118-27. DOI: 10.1016/S1474-4422(10)70223-4. View

17.

Kleinman A . From illness as culture to caregiving as moral experience. N Engl J Med. 2013; 368(15):1376-7. DOI: 10.1056/NEJMp1300678. View

18.

Belle S, Burgio L, Burns R, Coon D, Czaja S, Gallagher-Thompson D . Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Ann Intern Med. 2006; 145(10):727-38. PMC: 2585490. DOI: 10.7326/0003-4819-145-10-200611210-00005. View

19.

Kim S, Karlawish J, Kim H, Wall I, Bozoki A, Appelbaum P . Preservation of the capacity to appoint a proxy decision maker: implications for dementia research. Arch Gen Psychiatry. 2011; 68(2):214-20. PMC: 3349937. DOI: 10.1001/archgenpsychiatry.2010.191. View

20.

Hayward R, Kent D, Vijan S, Hofer T . Reporting clinical trial results to inform providers, payers, and consumers. Health Aff (Millwood). 2005; 24(6):1571-81. DOI: 10.1377/hlthaff.24.6.1571. View