For those newly diagnosed with Alzheimer’s disease, fear of an unknown future battling this degenerative disease will now need to be faced. Caregivers will begin to plan for how they will manage their role, both supporting a loved one and dealing with the pain both experience as the disease progresses.
We have found a very insightful list published by the Alzheimer’s Association that we wanted to share with our community. We hope that you find it as helpful as we did. You may want to share it with your senior loved one’s doctor. This was written by people with dementia to express their thoughts on their diagnosis and how best to improve the experience.
Principles for a Dignified Diagnosis
- Talk to me directly – “I am the person with the disease”
- Tell the truth – even if you don’t have all the answers
- Test early – getting the diagnosis early helps me live my life more fully and get the information I need, maybe can find a clinical trial
- Take my concerns seriously, regardless of my age – don’t discount my concerns because I am old but don’t forget this disease can affect those as young at 40
- Deliver the news in plain but sensitive language – help me understand and be sensitive to my feelings
- Coordinate with other care providers – talk to my other providers, I don’t want to repeat tests
- Explain the purpose of different tests and what you hope to learn – tell my why, how long it will take, let me take a break if needed and give me time to ask questions
- Give me tools for living with this disease – don’t leave me alone to deal with it after the diagnosis, tell me about local support groups and how to contact the Alzheimer’s Association for information, give me medical treatment options
- Work with me on a plan for healthy living – give me information on not only medications but diet, lifestyle, exercise and social engagement
- Recognize that I am an individual and the way I experience this disease is unique – remember when giving advice that each person is affected differently and at a different pace
- Alzheimer’s is a journey, not a destination – continue to be my advocate after you write a prescription, not only for my medical care but for my quality of life as I live with Alzheimer’s.
For more information about this disease, contact the Alzheimer’s Association.
We wish your senior loved one and all family caregivers health and well-being as you travel this long journey together!