As you and your loved one begin the Alzheimer's journey, we know that the options and services and programs can seem a little overwhelming. We've put together the most common questions we get in the FAQs below but, as always, please do not hesitate to contact us with further questions. We're here to help!
Questions About Alzheimer's Disease
What is dementia?
Dementia is a syndrome (set of symptoms) characterized by a gradual decline in mental abilities, such as memory, personality, behavior and thought. Dementia symptoms can be caused by any number of different diseases, including Alzheimer's disease, Parkinson's disease and Vascular Dementia. When a person exhibits signs of dementia, further medical evaluation is warranted to distinguish what type of dementia he/she may be experiencing, as well as to rule out potentially treatable/reversible causes of cognitive decline, such as vitamin deficiency, thyroid imbalance or depression.
What is Alzheimer's disease?
Alzheimer's disease is one condition that causes dementia. Decline in short-term memroy is commonly an early symptom, with loss of other mental abilities, such as judgement, decision-making ability, self-control, insight and language skills increasing over time. Alzheimer's disease is a physical disease process, characterized by plaques and tangles in the brain of the affected person. Current treatments may delay the progression of symptoms, but do not stop or reverse the underlying disease process.
What are some of the early signs that someone may be experiencing Alzheimer's disease or another form of dementia?
Some early warning signs of Alzheimer's disease include:
- Memory loss, particularly for recent events;
- Difficulty with complex tasks that were once routine, such as managing finances;
- Personality changes;
- Changes in language skills, such as difficulty in finding the right word when speaking.
- Individuals with early-stage dementia or Alzheimer's disease often appear 'normal' at first, but their deficits may interfere with their ability to perform certain tasks and follow daily routines.
What are common symptoms as the disease progresses?
Over time, dementia symptoms become more severe, and the person becomes more dependent upon a caregiver for assistance with activities of daily living.
Memory impairment becomes more pronounced, and the person may experience disorientation to place and/or time.
Increasing language difficulties, impaired ability to perform skilled movement, loss of inhibition and restlessness often occur.
Behavioral changes and/or agitation may take place.
Over time, physical manifestations, such as difficulty with coordinating movements and difficulty swallowing, occur.
What can people living with Alzheimer's disease and related dementia do to improve quality of life?
There are many things that people with dementia can do to enhance their daily lives. Programs and services exist to help the affected individual find opportunities for enjoyment, mental activity and social connection. Caregiver services can be invaluable to family members seeking information, support, resources and respite. For more information, contact the Long Island Alzheimer's Foundation.
How can I participate in Alzheimer's research?
Many people who have been affected by Alzheimer’s wonder how they can help combat this devastating disease. Volunteering to participate in research is one powerful way. Right now, at least 70,000 volunteers are needed for more than 150 active Alzheimer’s and related clinical trials and studies in the United States. All kinds of people, including healthy older adults, can join in this critical research.
Participating in Alzheimer’s Research: For Yourself and Future Generations, a new booklet from the National Institute on Aging at NIH, explores how to find Alzheimer’s and related studies that might be right for you, the benefits and potential risks to consider, what happens when you join a trial or study, how safety is protected and questions to ask. Read, download, or order free copies of Participating in Alzheimer’s Research online or call the ADEAR Center at 1-800-438-4380. Also, please share this information on social media: Ever thought about joining an #Alz clinical trial or study? Learn what’s involved in a new booklet from #NIH. http://1.usa.gov/1nLcYv6
Online resources for patients and Alzheimer's caregivers
We have compiled a list of online resources which you may find helpful as you begin or continue on your Alzheimer's journey. We hope you find the list useful. If you know of a worthy source of information, don't hesitate to contact us so we can share it with other Alzheimer's patients and families. Click here for a printable list (pdf)
- www.thealzheimerspouse.com – “A place of comfort for those who are trying to cope with the Alzheimer's dementia of a spouse.” Offers caregivers virtual support groups on many relevant topics.
- www.usagainstalzheimers.org – US Against Alzheimer’s is a national grassroots action and public advocacy group that works on behalf of those with Alzheimer’s disease and their caregivers. The site posts stories from caregivers as well as helpful information, blogs, news, and activist information.
- www.ThisCaringHome.org – This Caring Home provides tips and tools to enhance home safety for persons with Alzheimer’s disease and related memory disorders.
- www.webmd.com/alzheimers/news – This WebMD site is a reliable source of information about all things related to Alzheimer’s disease. Sign up for their newsletters on the lower right of the page.
- http://mayocl.in/JW76C0 – Use this link to sign up for Mayo Clinic’s free e-mail newsletter, “Alzheimer's Caregiving.”
- www.alz.org – Alz.org is the web site of the Alzheimer’s Association and contains extensive information on many topics for Alzheimer’s disease caregivers and professionals alike.
- www.alzfdn.org – The Alzheimer’s Foundation of America is another repository of extensive information about the disease and resources for caregivers.
- www.conta.cc/1d1zGIr – Alzheimer’s Daily News is a site that offers updated news about current research and studies, and links to other helpful resources. Subscribe to their daily updates by clicking the “Join E-Mail List” button on the upper right of the site’s home page.
- www.medicalnewstoday.com – Medical News Today offers breaking news on Alzheimer’s disease research and scientific findings (and other illnesses).
- www.nia.nih.gov/Alzheimers – This is the website of the Alzheimer’s Disease Education and Referral Center of National Institute on Aging. It offers information on clinical trials and the scientific activities of the institute’s Alzheimer’s Disease Research Centers.
- www.alzinfo.org – This is the website of New York University’s Fisher Center for Alzheimer’s Research Foundation. Sign up for their free newsletters by completing the form under the headline “Educate Yourself.”
- www.johnshopkinshealthalerts.com – This site offers free e-mail news alerts from Johns Hopkins Medicine to keep you up to date on the latest medical news about the most common medical conditions which prevent healthy aging. Sign up for “Memory” alerts (and other subjects) by entering your e-mail address and checking the boxes.
- www.adcs.org/Research/registry.aspx – Sign up here for a monthly newsletter about current clinical-scientific research sponsored by the National Institute on Aging, published by The University of California at San Diego’s Alzheimer’s Disease Cooperative Study.
- www.alzforum.org – Al'z Forum is a forum for news and discussion about Alzheimer’s disease–related issues. Sign up for their weekly newsletter by clicking on “Newsletter” at the upper right of the home page.
Simple Tips for Daily Tasks
A person who has Alzheimer's might become agitated when once-simple tasks become difficult or impossible. To limit challenges and ease frustration:
- Schedule wisely. Establish a routine to make each day more predictable and less confusing. Schedule the most difficult tasks, such as bathing or medical appointments, for the time of day when your loved one tends to be most calm and agreeable.
- Take your time. Expect things to take longer than they used to. Schedule more time to complete tasks so that you don't need to hurry your loved one.
- Involve your loved one. Allow your loved one to do as much as possible with the least amount of assistance. For example, perhaps your loved one can dress alone if you lay out the clothes in the order they go on.
- Limit choices. The fewer the options, the easier it is to decide. For example, provide two outfits to choose between — not a closet full of clothes. Eliminate belts or accessories that are likely to be put on incorrectly.
- Provide simple instructions. When you ask your loved one to do something, do it one step at a time.
- Reduce distractions. Turn off the TV and minimize other distractions at mealtime and during conversations so that your loved one can better focus on the task at hand.
Your loved one's ability to function and cope will steadily decline. It might even vary from day to day. Try to stay flexible and adapt your routine as needed.
For example, if a favorite food suddenly becomes unappealing to your loved one, adjust the menu. If your loved one starts insisting on wearing the same outfit every day, consider buying a few identical outfits. When your loved one is bathing, switch the worn outfit for a clean one.
You might also relax your standards a bit. Bathing, for example, might not be necessary every day — especially if it's upsetting for your loved one. Try sponge baths between showers or tub baths.
Create a safe environment
Alzheimer's disease impairs judgment and problem-solving skills, increasing your loved one's risk of injury. To keep your loved one safe:
- Prevent falls. Avoid scatter rugs, extension cords and any clutter that could cause your loved one to trip or fall. Install handrails or grab bars in critical areas.
- Use locks. Install locks on cabinets that contain anything potentially dangerous, such as medicine, alcohol, guns, toxic cleaning substances, dangerous utensils and tools.
- Check water temperature. Lower the thermostat on the hot-water heater to prevent burns.
- Take fire safety precautions. Keep matches and lighters out of reach. If your loved one smokes, make sure he or she does so only with supervision. Make sure a fire extinguisher is accessible, and the smoke alarms have fresh batteries.
Focus on individualized care
Each person who has Alzheimer's will experience its symptoms and progression differently. Consequently, caregiving techniques need to vary. Tailor these practical tips to your loved one's individual needs.
Remember, your loved one's responses and behaviors might be different from what they used to be. Patience and flexibility — along with good self-care and the support of friends and family — can help you deal with the challenges and frustrations ahead.