Receiving a diagnosis of developing dementia or Alzheimer’s is extremely difficult all on its own – add in the stress and fear of what to expect and how to plan for the future and it can become completely overwhelming. Thinking and talking about the future at this time can be hard, but it can be very beneficial to you and to your loved ones. Learning what to expect and taking action to put plans in place for the future may improve quality of life and reduce stress down the road for you and your family. Here are four important steps to take…
- Educate yourself and your loved ones about Alzheimer’s disease and how it progresses. This can help to alleviate some fear and stress that is associated with the unknown, and allows you and your caregivers to be better prepared for those changes as they occur. The Alzheimer’s Association offers free online courses that you can view at any time.
- Explore the latest research on how you may be able to slow the progression of the disease. While there is no cure for Alzheimer’s yet, researchers are making great strides in better understanding the disease and what factors –like diet, exercise, medications – might help slow or stop the progression of the disease. Do syour own research on the disease.Explore research opportunities and clinical trials available at the Memory and Aging Program and consider participating in a study. Taking action to remain as healthy as possible for as long as possible can help alleviate some of the helplessness that is often felt after an Alzheimer’s or dementia diagnosis.
- Plan ahead to ensure your loved ones have the information and tools they need to care for you and to carry out your wishes relating to your healthcare, financial and legal matters.
- Make a plan for who will be included in your care team. The Alzheimer’s Association provides some helpful tips on how to build a care team.
- Make your healthcare wishes known to your care team through an advance directive.. This includes selecting an individual that can make decisions for you about your healthcare should you become unable to do so on your own.Make a living will, which outlines your wishes for your future medical care; these are state-specific, so be sure to consult your state guidelines.
Rhode Island advance directives
Massachusetts advance directives
Connecticut advance directives
If you’re unsure about what your medical care might entail and what your options are, talk with your doctor, who can develop a comprehensive care plan for you. The American Bar Association’s Advance Care Planning Toolkit also includes a great deal of information and practical guides to help you make important decisions involved in creating an advance directive. The National Healthcare Decisions Day website provides a Conversation Starter Kit to guide all individuals in talking about and planning for end of life decisions and care.
- Put a plan in place for other legal and finanical needs. The Alzheimer’s Association provides an excellent and in-depth guide for legal planning and financial planning.
- Lastly, know that you are not alone. Search out and make note of the resources available for people with Alzheimer’s and their caregivers in your area.
Virtual resources include:
- The Memory and Aging group page on Facebook, which provides information on local Alzheimer’s research, educational opportunities, events and resources.
- Join an online community forum or message board. The Alzheimer’s Association hosts message boards and chat rooms for those with Alzheimer’s and dementia and their families at alzconnected.org and alzforum.org has some terrific resources to connect with others working through Alzheimer’s disease.
- The Alzheimer’s Association Helpline is available 24 hours a day, seven days a week to answer questions and offer emotional support: 1-800-272-3900.
Local resources available here in Rhode Island include:
- Alzheimer’s Association Rhode Island hosts an early stage support group for those with early memory loss, support groups for caregivers of those with Alzheimer’s and other dementias, as well as educational classes and other events
- HopeHealth offers free, public Alzheimer’s educational support groups as well as a general caregiver support group.
- There are a number of Memory Cafés wherethose living with Alzheimer’s and dementia, along with their caregivers, can come together socially to enjoy cognitive stimulation, companionship.
A diagnosis of Alzheimer’s disease can be overwhelming but you do not have to feel helpless and you don’t have to face it alone. Empower yourself with knowledge that can help you to live your best life; plan ahead to put your mind at ease about what the future will hold for you and your loved ones; and fight back by coming together with others through support groups, Alzheimer’s awareness and advocacy efforts, research studies, or volunteer opportunities.
The Memory and Aging Program (MAP) at Butler Hospital is a worldwide leader in Alzheimer’s disease research and a local Rhode Island partner in the fight against Alzheimer’s disease and other dementias. We are working hand in hand with community groups, health care providers, research organizations, and people like you to find preventative and breakthrough treatments for Alzheimer’s disease.
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