LIVING WITH ALZHEIMER’S DISEASE

An early diagnosis allows for valuable time in which patients, together with their care team, can identify resources and strategies to manage this new phase of life.1

People living with Alzheimer’s disease (AD) and their caregivers are not alone. They can count on patient support groups, services and resources to help them cope with the disease and find strategies to 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

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.3,4

Knowing what comes after diagnosis

A diagnosis of mild cognitive impairment (MCI) due to AD means that the patient has a slight but noticeable and measurable cognitive decline. This gives the patient and the family members valuable time to prepare for the future.1

The following section provides people with a diagnosis of MCI due to AD with some practical advices to cope with the disease:2,5,6

  • Acknowledge your emotions and talk openly about your feelings with family and close friends. This can be an empowering first step to accept this new phase of life and look ahead.1,7
  • Discuss and make decisions about what you and your family members or caregiver can do to cope with your disease. You may want to disclose the diagnosis to friends and families. Furthermore, studies have shown that active management of AD can improve the quality of life of affected people and their caregivers.8,9
  • Join support groups to connect with people who are also living with the disease and understand what it means going through it. With their help you can identify additional support groups or services available for legal, financial, medical, and social service information.1,5
  • 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.10-12
  • Monitor your health and make regular appointments with your primary care doctor or specialist (neurologist, neuropsychiatrist, geriatric psychiatrist). Decide if you want to go to a memory disorder clinic.1,2
  • Take care of yourself and continue to do the activities you enjoy.2,5,6

Individualized Care by Multidisciplinary Teams

Multidisciplinary care teams are required to support the patients in their ongoing disease management. Knowledgeable caregivers among others include primary care physicians, specialists (neurologist, neuropsychiatrist, geriatric psychiatrist, psychologists), nurses, occupational therapists, physical therapists, and social workers. The multidisciplinary care team will focus on the following interventions:9,13

Brain Health

Lifestyle changes can help reduce the risk of dementia14

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Slowing down the symptoms of the disease

to provide comfort, dignity and independence for a longer period of time14

Managing behavioral symptoms

to increase quality of life of patient and caregiver (i.e. reduce sleeplessness, agitation, anxiety, restlessness and depression)14

 WHAT'S NEXT 

For Caregivers

Addressing caregivers needs and active management of Alzheimer’s disease can improve the quality of life of those affected from the disease.

 

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’s Association: I Have Alzheimer's, https://www.alz.org/help-support/i-have-alz. Accessed December 17, 2020.

3.Alzheimer Europe: Accepting help from others, Life After Diagnosis, https://www.alzheimer-europe.org/Living-with-dementia/After-diagnosis-What-next/Taking-care-of-yourself/Accepting-help-from-others. Accessed December 17, 2020.

4.Alzheimer Europe: Attending self-help groups, https://www.alzheimer-europe.org/Living-with-dementia/After-diagnosis-What-next/Taking-care-of-yourself/Attending-self-help-groups. Accessed December 17, 2020.

5.Alzheimer Europe: After diagnosis - What next?: Life After Diagnosis, https://www.alzheimer-europe.org/Living-with-dementia/After-diagnosis-What-next. Accessed December 17, 2020.

6.National Institute on Aging: Next Steps After an Alzheimer's Diagnosis, https://www.nia.nih.gov/health/next-steps-after-alzheimers-diagnosis. December 17, 2020.

7.Alzheimer Europe: Facing the diagnosis, https://www.alzheimer-europe.org/Living-with-dementia/After-diagnosis-What-next/Diagnosis-of-dementia/Facing-the-diagnosis. Accessed December 17, 2020.

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 and Alzheimer's Disease, https://www.nia.nih.gov/health/home-safety-and-alzheimers-disease. December 17, 2020.

11.Alzheimer Europe: Dealing with practical issues, https://www.alzheimer-europe.org/Living-with-dementia/After-diagnosis-What-next/Dealing-with-practical-issues. Accessed December 11, 2020.

12.Alzheimer’s Association: Building a Care Team, https://www.alz.org/help-support/i-have-alz/plan-for-your-future/building_a_care_team. Accessed December 17, 2020.

13.Alzheimer’s Association. Alzheimer’s Association Report: 2020 Alzheimer’s disease facts and figures. Alzheimer’s Dement.2020;16(3):391-460.

14.National Institute on Aging: How Is Alzheimer's Disease Treated?, https://www.nia.nih.gov/health/how-alzheimers-disease-treated. December 17, 2020.