Your Life - Living with Alzheimer's

Reviewed by: HU Medical Review Board | Last reviewed: June 2019

Once an Alzheimer's diagnosis has been made, the person diagnosed and their loved ones may feel a range of emotions: sadness, being overwhelmed, fear, or even maybe a little relief because there’s now an answer to the symptoms. The next step is figuring out the “new normal,” and it helps to have support from various sources, learning more about the disease, how it can affect a person’s life (and that of the family and caregivers), and how to navigate what’s next.

Alzheimer’s progresses in various stages, and living with the disease can look very different at different times. Learning about the potential changes that come with each stage of the disease can help patients and their families and/or caregivers prepare for everyday living and activities, as well as prepare emotionally for various issues that might come up. Things may look different, but there are still many things that can be done to help maintain independence as long as possible and continue living a meaningful, rich life.

Accepting changes and making plans

One of the first things in living with a new diagnosis of Alzheimer’s disease is accepting that things will change, maybe not so much immediately, but in the near future. Things will continue to change, too, in ways that weren’t necessarily planned. Accepting that things will change, instead of pretending nothing is wrong, can help the person with Alzheimer’s get help sooner, which can keep them financially secure as well as physically safe.1 Working with the individual on accepting a new normal and developing strategies to adapt also empowers them and provides a sense of security and control, and keeps them engaged with their own life.1,2 Keeping this in mind, each person is different. People will respond in different ways, and it might take one person longer than another to come to terms with a diagnosis and start planning for things.

Accepting changes and making plans for adaptations can also include figuring out strategies to help make everyday activities easier or less complicated, which will let the individual participate more without becoming overwhelmed. Different strategies may be used at different times as the Alzheimer’s progresses, and that’s to be expected.

Practical strategies for living with Alzheimer's

There are lots of practical strategies that can be done that can help people diagnosed with Alzheimer's and their families and caregivers navigate life with Alzheimer’s disease. While some of these things seem obvious, when a major medical diagnosis is made, it’s easy to forget what obvious things can be done – especially when faced with a mountain of new information and challenges. Here are some things to keep in mind when helping someone live with Alzheimer’s disease:

  • See the doctor regularly for all scheduled appointments; this includes different kinds of doctors like a general practitioner, neurologist, and any other specialist
  • It is helpful to have a caregiver attend appointments with the person living with Alzheimer’s disease to give the doctor a full picture of symptoms and to help navigate the treatments when the person returns home.
  • Communicate openly with the person as much as possible as to what is going on and ways to cope
  • Get support locally and online: for the patient, family, and caregivers
  • Make legal, financial, and long-term care plans as early as possible: update wills, living wills, power of attorney, account holders, make wishes known about care including whether a senior living community may be appropriate and so forth
  • Accept help as needed with everyday activities like cooking, medication, paying bills, and transportation
  • Make the home or surrounding environment safe
  • Talk to a doctor about participating in clinical trials, if appropriate
  • Maintain overall health, social activities, and wellness: exercise, see friends, stay active, eat a healthy diet, etc.

Patients and their caregivers should talk with their treatment team about resources for support and health, as well as things they should keep in mind at each stage of Alzheimer’s disease. Support groups, both in-person and online, can be a wealth of information about navigating each stage of Alzheimer’s disease and ways to ensure the safety and wellness of patients.

Living with Alzheimer’s disease may look different than life before the diagnosis, but it doesn’t have to be bleak. There are ways to maintain independence as long as possible, and continue participating in activities and much more.

Check out the interactive Alzheimer’s journey

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