Resources for People with Alzheimer’s Disease and Their Caregivers

People with Alzheimer’s disease and their caregivers wage a difficult battle on many fronts day and night, experiencing strength and grace, but also tremendous emotional pain, frustration sorrow, and a deep sense of loss.

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People with Alzheimer’s disease and their caregivers wage a difficult battle on many fronts day and night, experiencing strength and grace, but also tremendous emotional pain, frustration sorrow, and a deep sense of loss. The physical, economic, and emotional toll on people touched by Alzheimer’s is staggering across all socio-economic groups. And, added to these burdens, the stigma Alzheimer’s disease carries with it can often lead to misunderstanding, isolation, and hurt heaped upon hurt.

There are many resources available to give those affected by Alzheimer’s the information, support, and encouragement they need. From diagnosis throughout the journey, the person with Alzheimer’s and his or her caregivers will discover that they are not alone, there are people and organizations who care, and comfort is possible, even if the disease itself is incurable. It may take time to find the resources that are most effective and appropriate for your particular situation, but the extended community of people who work with and for those with Alzheimer’s disease and their loved ones is dedicated to helping.

Getting information

When someone is diagnosed with Alzheimer’s disease, he or she, and all caregivers and loved ones, too, will have many questions and seek additional information. To begin, the primary physician and geriatrician, geriatric psychiatrist or neurologist involved in the diagnosis process is the initial and ongoing source for personal medical guidance and treatment.

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The medical professional who coordinates care following diagnosis will be able to provide information about local resources where the person with Alzheimer’s disease and caregivers may start to address additional questions, such as how and what to take into consideration about the future (living arrangements, legal issues, etc.).

When meeting with any member of the medical team, it helps to have a written list of questions to ask. Sometimes, it is also helpful to have more than one person accompany the caregiver or person with Alzheimer’s to a doctor’s appointment - another pair of ears and eyes might catch information or ask questions that the other person might not hear or remember to ask.

Helpful organizations

The Alzheimer’s Association (www.alz.org) provides many services to people with the disease, including information, access to “Trial Match,” a database of clinical trials, and advocacy opportunities. Caregivers and people with the disease can also benefit from the local support groups organized by the Association, an online support community, and the Association’s Helpline: 1-800-272-3900, which is available 24 hours a day, 7 days a week.

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Maureen Pratt
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