People living with Alzheimer’s disease (AD) and their care partners are not alone. Patient associations provide valuable services and resources to help cope with the disease including strategies on how to best move forward.2
Accepting a diagnosis of AD may be difficult for both the person living with the disease and for family or close friends. Most people experience feelings of disbelief, anger, fear, hopelessness, and do not know where to start and how to get help.1,6
However, useful information and resources are available for those living with or caring for someone with AD. Asking for help is the best way to deal with this situation and to gain strength and courage.2-6
Knowing what comes after diagnosis
In the early disease stage called mild cognitive impairment (MCI) due to Alzheimer’s disease (AD), cognitive difficulties may have a detectable but mild impact on more complex daily activities. The person affected may be less efficient in carrying out certain tasks but will still be able to do so. A timely diagnosis will enable individuals and their families to learn what to expect in the future and to plan accordingly.1
The following section provides people with a diagnosis of MCI due to AD with practical advice to cope with the disease:
- Acknowledge your emotions and talk openly about your feelings with family and close friends. This can be an empowering first step in accepting this new chapter of your life.1,4,7
- Discuss and make decisions about what you and your family members or care partners can do to cope with your disease. You may want to disclose the diagnosis to friends and families. Studies have shown that active management of AD can improve the quality of life of affected people and their care partners.8,9
- Join support groups to connect with other people living with AD and to understand what it means to be going through it. With their help, you can identify additional support groups or services providing legal, financial, medical, and social service information.1,2,11
- Get help as needed with day-to-day tasks. Consider building a group of people around you to whom you can reach out at different times and for different tasks. Evaluate your safety at home and on the road. Care services are available to help you identify memory aids, other than sticky notes, and technology solutions to deal with everyday life.10,11
- Monitor your health and make regular appointments with your primary care doctor or specialist (neurologist, neuropsychiatrist, geriatric psychiatrist). Discuss with your doctor whether you should attend a memory clinic.1
- Take care of yourself and continue to do the activities you enjoy.3
Individualized Care by Multidisciplinary Teams
Multidisciplinary care teams are required to support patients in their ongoing disease management. Knowledgeable care providers include primary care physicians, specialists (neurologist, neuropsychiatrist, geriatric psychiatrist, psychologists), nurses, occupational therapists, physical therapists, and social workers. This multidisciplinary care team will focus on the following interventions:9,12
Brain Health
Lifestyle changes and modifying risk factors can help reduce the risk of dementia13
Slowing down the symptoms of the disease
This can provide comfort, dignity and independence for longer12
Managing behavioral symptoms
This can help increase quality of life for patient and care partners by reducing sleeplessness, agitation, anxiety, restlessness, and depression14
WHAT'S NEXT
For Care Partners
Addressing care partners’ needs together with the active management of Alzheimer’s disease can improve the quality of life of those affected from the disease.9
References
1.Austrom MG, Lu Y. Long term caregiving: helping families of persons with mild cognitive impairment cope. Curr Alzheimer Res. 2009 Aug;6(4):392-8.
2.Alzheimer Europe. Members, www.alzheimer-europe.org/about-us/who-we-are/members. Accessed January 2022.
3.Alzheimer's Association. Live well, www.alz.org/help-support/i-have-alz/live-well. Accessed January, 2022.
4.Alzheimer's Association. Overcoming stigma, www.alz.org/help-support/i-have-alz/overcoming-stigma. Accessed January, 2022.
5.Hallam B, Rees J, Petersen I, Cooper C, Avgerinou C, Walters K. How are people with mild cognitive impairment or subjective memory complaints managed in primary care? A systematic review. Fam Pract. 2021;38(5):669-683.
6.Alzheimer's Association. Just diagnosed, www.alz.org/help-support/i-have-alz/know-what-to-expect/just-diagnosed. Accessed January, 2022.
7.Alzheimer's Association. Now is the best time to talk about Alzheimer's together, www.alz.org/alzheimers-and-dementia/timetotalk. Accessed January, 2022.
8.Vickrey BG, Mittman BS, Connor KI, Pearson ML, Della Penna RD, Ganiats TG, Demonte RW Jr, Chodosh J, Cui X, Vassar S, Duan N, Lee M. The effect of a disease management intervention on quality and outcomes of dementia care: a randomized, controlled trial. Ann Intern Med. 2006 Nov 21;145(10):713-26.
9.Grossberg GT, Christensen DD, Griffith PA, Kerwin DR, Hunt G, Hall EJ. The art of sharing the diagnosis and management of Alzheimer's disease with patients and caregivers: recommendations of an expert consensus panel. Prim Care Companion J Clin Psychiatry. 2010;12(1).
10.National Institute on Aging. Home safety checklist for Alzheimer's disease, www.nia.nih.gov/health/home-safety-checklist-alzheimers-disease. Accessed January, 2022.
11.Alzheimer’s Association. Plan for your future, https://www.alz.org/help-support/i-have-alz/plan-for-your-future/building_a_care_team. Accessed January, 2022.
12.2021 Alzheimer's disease facts and figures. Alzheimers Dement. 2021;17(3):327-406.
13.Risk Reduction of Cognitive Decline and Dementia: WHO Guidelines. Geneva: World Health Organization; 2019. https://www.ncbi.nlm.nih.gov/books/NBK542796. Accessed January, 2022.
14.Alzheimer’s Disease International. World Alzheimer Report 2011: the benefits of early diagnosis and intervention. https://www.alz.co.uk/research/world-report-2011. Accessed January, 2022.