Now What? Life Beyond Your Visit

A: It is important to confirm your diagnosis with a neurologist first, rather than guessing or searching online in advance. You may be able to notice that your symptoms may align with any one or more of these, and you can acquire support for your overarching daily needs from any of these broader sites and resources below.

For now, peruse and use this information most especially related to assisting with your daily care needs and for tips in responding to specific challenges and behaviors.

As for the specific diagnosis and medical treatment plan, we recommend confirming your diagnosis or completing your workup before you start reaching out to any particular organization for support related to that diagnosis. Once you have a diagnosis, then you can learn about the various types of dementia below and get connected to your local association that supports your specific condition. 

A: “Dementia is not a specific disease. It’s an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. Alzheimer’s disease is the most common type of dementia and accounts for 60 to 80 percent of cases. Other types of dementia include Dementia with Lewy Bodies, Frontotemporal, and Vascular [and more, as seen below].” – Dementia Friends USA

What is Dementia? 

These sites cover information on Alzheimer’s Disease and all other related dementias. Explore to learn what to expect along the way. 

The Memory Center at UChicago Medicine
See a brief description of all the various types here | About Dementia

NIA: National Institute on Aging | Alzheimer’s Disease and Related Dementias
www.nia.nih.gov/health/alzheimers

Alzheimer’s and related Dementias Education and Referral (ADEAR Center) | www.alzheimers.gov | 800-438-4380

Alzheimer’s Association | www.alz.org | 800-272-3900 (24/7 helpline)

Alzheimer’s Foundation of America www.alzfdn.org | 866-232-8484

                               _____________________________________________

Once your specific diagnosis is confirmed, if you have any of the other related dementias, connect with your local chapter of the association connected to your condition:

Alzheimer’s Association (covers all types of dementias) | www.alz.org | 24/7 helpline 800-272-3900

Alzheimer’s Disease Education and Referral Center | www.nia.nih.gov/Alzheimer’s | 800-438-4380

Alzheimer’s Foundation of America | www.alzfdn.org | 866-232-8484

Lewy Body Dementia Association | www.lbda.org | 800-539-9767

The Association for Frontotemporal Degeneration | www.theaftd.org | 866-507-7222

American Parkinson Disease Association | www.apdaparkinson.org | 800-223-2732

Creutzfeldt-Jakob Disease Foundation Inc. | www.cjdfoundation.org | 800-659-1991

CurePSP (including FTD, PSP, and CBD) | www.psp.org | 800-457-4777

Huntington’s Disease Society of America | www.hdsa.org | 800-345-4372

Hydrocephalus Association (NPH) | www.hydroassoc.org | 888-598-3789

Posterior Cortical Atrophy (PCA) | Korsakoff syndrome | Down syndrome | Vascular dementia:

Please refer to www.alz.org and www.dementiasociety.org for more information/support on the conditions above.

These resources can also be found on our page at: https://thememorycenter.uchicago.edu/resources-links/

It is never too early to learn how to interact with compassion and dignity through mild cognitive impairment and dementia. Disagreements and escalated or heated moments may arise. Here’s how to keep things cool and calm, regardless of knowing your diagnosis.

START HERE: We recommend that ALL patient’s families and care partners receive an introduction to Communication Strategies (1st 30 min = Alzheimer’s Association; 2nd 30 min = from The Memory Center). Visit often, pause, take notes, watch in segments, and replay anytime.  

https://alz-org.zoom.us/rec/share/nHKgks4HMoFF_XuzByMeribK_BEbJy3Z8BKuab2rSKB-cv6rOJj8wkmTKHsHtsSf.fWSkkwyJptzGa89Z?startTime=1652194444000

Responding to Challenging Moments and Behaviors (Teepa Snow): Teepa Snow is world famous for her wit and compassion. Visit this archive of videos that help you respond to every possible situation that can arise through cognitive impairment or in dementia care.  https://www.youtube.com/channel/UCSXrEX7LkWOmfTaV6u1C7wQ
www.teepasnow.com

Additional On Demand Recordings:

https://www.alz.org/illinois/helping_you/education/virtual_learning

Helpful Digital Publications:

https://www.alz.org/help-support/resources/publications 

Become a ‘Dementia Friend’! Learn how to notice dementia in your community. Watch these brief videos to see how to help in a store, library, church, dining, medical setting, and more. Once viewed, you are officially added to the national count as a ‘Dementia Friend’! You can spread the word to others and contribute towards this nationwide effort to increase awareness. 

https://dementiafriendsusa.org/ 

◾Alzheimer’s Early Stages

◾Dementia Reconsidered 

◾A Personal Guide to Living with Progressive Memory Loss

◾Mom, Are You There?

◾Younger People with Dementia

◾The Complete guide to Alzheimer’s Proofing Your Home

◾Still Alice

◾The Person with Alzheimer’s Disease

◾Alzheimer’s from the Inside Out

◾Comforting the Confused

◾Don’t Forget

◾Learning to Speak Alzheimer’s

◾The Validation Breakthrough

◾Care the Works

◾Forget Memory 

◾What’s Happening to Grandpa?

◾ Alzheimer’s Early Stages: First Steps for Family, Friends, and Caregivers; 3rd Updated Edition

◾ The Art of Dementia Care (both books by Daniel Kuhn, MSW)

◾ The Best Friends Approach to Dementia Care; 2^nd edition by David Troxel and Virginia Bell

◾ Loving Someone Who Has Dementia by Pauline Boss, PhD

The journey of an Alzheimer’s or other related dementia can range vastly, from 2 to 10-20 years.

The best marker of progression is keeping up with your medical appointments.

Typically there is a visit about 3 months after diagnostic workup, and every 6 months thereafter, until the doctor indicates you are ready to stretch out to an annual follow up. 

You as the observing care partner can know best what stage they are in depending on the symptoms you notice.

For example, use the symptom checker below to on the stages of dementia to gauge the status of progression.

https://www.alz.org/alzheimers-dementia/stages 

Between visits, you can contact the clinic for symptom flare-ups, behavioral challenges, obvious changes, and obstacles in care. We can assess for adjustments in medication, increasing level of care needs, and rule out any other underlying health issues (e.g. respiratory or urinary tract infections).   

The journey of an Alzheimer’s or other related dementia can range vastly, from 2 to 10-20 years.

The best marker of progression is keeping up with your medical appointments.

Typically there is a visit about 3 months after diagnostic workup, and every 6 months thereafter, until the doctor indicates you are ready to stretch out to an annual follow up. 

You as the observing care partner can know best what stage they are in depending on the symptoms you notice.

For example, use the symptom checker below to on the stages of dementia to gauge the status of progression.

https://www.alz.org/alzheimers-dementia/stages 

Between visits, you can contact the clinic for symptom flare-ups, behavioral challenges, obvious changes, and obstacles in care. We can assess for adjustments in medication, increasing level of care needs, and rule out any other underlying health issues (e.g. respiratory or urinary tract infections).   

– pro-bono (free)

– private pay

– pro-bono (free)

– private pay

– Independent 

– Assisted Living

– Assisted Memory

– Skilled Nursing

To inquire about your local senior center and other programs, resources, and caregiver support services available to you, visit:

www.ilaging.illinois.gov – Department on Aging – City of Chicago

www.AgeOptions.org  – Suburban Cook County

www.AgeGuide.org – Collar Counties

www.eldercare.gov – National Website for your local Area Agency on Aging 

– Advance Directives

– Bills/Finances

– Elder Law consult

Adult Day Centers are secure environments for those that need increased level of care. They can be private pay or subsidized by the state at 1/2 or full day, with affordable rates. This is a common option for families that work or for individuals that live alone. 

There are 3 ways to identify your local adult day centers:

https://www.nadsa.org/locator/

www.communityresourcefinder.org > ‘Home Care’ > ‘Adult Day’ and filter by zip code and mileage to find your local adult day center

www.eldercare.gov – This is the national site for every region’s local Area Agency on Aging, and you can request adult day services

A senior center is open to the public and is available to those who require less care. They often have recreational programming and participants are able to attend with a care partner. These are the local City of Chicago Senior Centers: https://www.chicago.gov/city/en/depts/fss/provdrs/senior/svcs/regional_senior_centers.html 

To inquire about your local senior center and other programs, resources, and caregiver support services available to you, visit:

www.ilaging.illinois.gov – Department on Aging – City of Chicago

www.AgeOptions.org  – Suburban Cook County

www.AgeGuide.org – Collar Counties

www.eldercare.gov – National Website for your local Area Agency on Aging   

– pro-bono (free)

– private pay

– pro-bono (free)

– private pay

– pro-bono (free)

– private pay

– pro-bono (free)

– private pay

– pro-bono (free)

– private pay

– pro-bono (free)

– private pay

Adapted from

MensFitness | Brain Health
by Sarah Di Giuilio

The secret to good brain health is to stay healthy from head to toe. Many medical conditions can cause or promote memory decline, especially cardiovascular issues, sleep disorders, and depression. So, make sure that you are following the recommendation of your general doctor and specialists and taking your medications, as prescribed. In addition, research over the last several years has provided strong evidence that several lifestyle modifications can help to delay the onset or the progression of Alzheimer’s Disease and related dementias. We’ve listed some key things to incorporate in your daily routine, that should help ensure the best possible brain health.

1. Develop an Exercise Routine – Regular physical activity is one of the best ways to keep your brain healthy. The more you keep the body, as well as the mind, engaged and active, the better both will work together. A considerable amount of research suggests regular exercise can improve cognition and delay the development of dementia. Current guidelines recommend at least 150 minutes of moderate-to-intense aerobic activity each week. Although a cardio work out such as running, brisk walking, or using the treadmill, stationary bike, or elliptical has the greatest evidence to benefit the brain, newer studies also suggest some degree of muscle-building activity can help. We recommend starting with a cardio workout, just a few minutes a day for the first week and slowly building up the time spent each day until you reach the goal of 30 minutes or more per day.

2. Get Your Sleep – When your body feels tired from the lack of shut-eye, your brain suffers. It’s not able to concentrate and focus as well as it does when it’s rested. Studies show that sleep not only allows your brain to rejuvenate, it has important biological functions that impact memory and risk to, or progression of, dementia. During sleep, detrimental proteins that accumulate in Alzheimer’s disease are cleared away while the brain actually works to strengthen memories of the day. Sleep duration should be between 7 and 9 hours, as studies suggest that sleeping shorter or longer can be detrimental to your cognitive functioning and the progression of Alzheimer’s Disease. And if you’re feeling extremely drowsy during the day and can lie down, strategic 10- or 20-minute naps can improve overall focus.  But sleeping for longer than 1 hour during the day isn’t a great idea, as this could interfere with your nighttime sleep schedule. If you exercise daily, that will help you sleep at night! If you have a lung disease, or sleep apnea, make sure you take good care of those conditions, as they may impair oxygen delivery to your brain, which is critical for the brain to function optimally. 

3. Eat a Healthy Diet – The good fats found in fish, as well as some nuts may help to protect your brain cells and keep them functioning at their peak. Some studies have shown that omega-3 fatty acids, in particular, may improve cardiovascular function, which in turn improves brain function because what’s good for the heart is good for the brain! However, not all studies show consistent results – it is thought that getting the omega-3 from the source rather than from pills, which is done in such studies, may be best. In fact, dietary studies have found that people who eat at least one seafood meal a week (regardless of whether those fish have fins or shells!) have less Alzheimer’s Disease pathological changes in their brain at death. Multiple studies repeatedly show that a Mediterranean diet rich in fish, fruits, and vegetables increases longevity and delays the development of cognitive decline. So fish really is good brain food!  

4. Get Your Vitamins Insufficiencies in certain B vitamins, as well as vitamin D and folic acid, worsen brain function in the short term—and could even mimic signs of dementia. Eating a well-balanced diet that includes fruits, vegetables, and low-fat dairy provides most people the daily allotment of vitamins they need. If you opt for a multivitamin, read the label and look for one with at least 100% of your recommended daily allowance of vitamin E, vitamin D, B-complex vitamins (B-1, B-6, and B-12), and folic acid. Don’t overdo supplements! Most supplements are promoted by the companies that make them or “testimonials” on the internet from people who claim that they have “noticed an incredible improvement in memory” after taking them – don’t trust these testimonials, as they could be planted by the company or have some financial gain associated with their “testimonial”. and ask your doctor whether a supplement is appropriate. 

5. Do: Stay Social

Avoid isolating yourself. Return a phone call and make plans. Stay engaged in social activities. Social interactions stimulate the mind, heighten brain activity, and present new problems for the brain to solve—which is one of the best ways to keep it in shape. In the long run, real-life problem-solving improves memory and helps cognitive function-ing even more than word games and memory exercises.

6. Don’t: Stress Out

We know—easier said than done. While some stress and anxiety may help motivate you to meet an approaching deadline, taking on too much backfires and prevents the brain from absorbing information as efficiently as it should. The long-term effects of stress hormones like cortisol can actually cause damage to brain cells, possibly affecting the hippocampus especially (the brain region that allows us to make memories). In fact, exercise has been shown to build up the hippocampus – that’s why the first step to good brain health is exercise!

– pro-bono (free)

– private pay

– Independent 

– Assisted Living

– Assisted Memory

– Skilled Nursing

– pro-bono (free)

– private pay

– pro-bono (free)

– private pay

www.lorenzoshouse.org – Lorenzo’s House is a budding non-profit with programming opportunities available for children/youth, care partners, and patients diagnosed with Alzheimer’s Disease and other related dementias. (Lorenzo was a dear patient at The Memory Center, and his wife Diana retired early to start Lorenzo’s House in response to the care and connection gap for younger onset families.) 

www.without-warning.net – Without Warning is a monthly support group hosted by Rush University Medical Center

https://www.alz.org/help-support/i-have-alz/younger-onset – Find local support anywhere in the country for younger onset Alzheimer’s Disease and other related dementias

www.ilbrainhealth.org – Explore all the dementia care initiatives happening throughout the state of IL 

www.dfamerica.org – Dementia Friendly America is a national initiative to enhance dementia awareness in every sector (storefront, library, dining, medical, school, etc.). To find your local Dementia Friendly neighborhood, visit this link. If in IL, visit www.ilbrainhealth.org above. 

www.chpv.org/dfhp – Dementia Friendly Hyde Park (local to The Memory Center)

– pro-bono (free)

– private pay