Intro
Who among us has known someone who has experienced, perhaps even died from Alzheimer’s Disease? It’s a terrible disease. Not only does it wreck the afflicted patients’ lives but also those in the care giver role as well. This Blog intends to explore facts and open up dialog about Alzheimer’s as it pertains to the Primary Care Practice. If we all share the information we have about Alzheimer’s Disease, we should be able to make a positive difference in patients and their families.
Quick Facts
According to the Alzheimer’s Association (www.alz.org), the population of Americans living with Alzheimer’s Disease is growing quickly1. Today, 5.4 million Americans are living with Alzheimer’s Disease, and that includes an estimated 200,000 under the age of 65. By 2050, up to 16 million Americans will have the disease.
3.3 Million, or two thirds of the Alzheimer’s population are women2.
Someone develops Alzheimer’s disease in the United States every 66 seconds3.
Cost
The Alzheimer’s Association says that in 2016, direct costs to America of caring for Alzheimer’s patients will be $236 Billion. Half of that cost will come from Medicare.
Unless a cure is invented (soon), in 2050, Alzheimer’s Disease will cost $1.1 Trillion (in 2016 dollars). Medicare will pay $589 Billion of that bill4.
Clinical Info
Alzheimer’s Association fact: “This disease is the only cause of death among the top 10 in America that cannot be prevented, cured, or even slowed5”.
But see the section titled “New Treatments.” There IS hope. But we have to band together to address this horrible disease now by regular assessment of ALL Medicare patients every year, AND proactive communication of information to patients and care givers.
Early stage issues
There are three stages of Alzheimer’s Disease. Those stages, along with their signs are outlined here6:
Early Stage: Memory concerns, deterioration of executive function, mood swings and reluctance to engage.
Middle Stage: Needs help with every day activities, show agitation, have sleep disturbances, lose their ability to drive and are at risk of unsafe wandering.
Late Stage: Approaching end of life, care giver burdens and management issues rapidly increase in size and scope.
10 signs of Dementia
Here are 10 signs of Alzheimer’s and Dementia as compiled by the Alzheimer’s Association7:
1. Memory loss that disrupts daily life
2. Challenges in planning or solving problems
3. Difficulty completing familiar tasks at home, work or at leisure
4. Confusion with time or place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood and personality
A solid Annual Wellness Visit (AWV) program (annually) will be able to detect these and other early warning signs of Alzheimer’s Disease by performing cognitive tests such as the MMSE and checking performance of Active Daily Living (ADL) benchmarks. However, it’s important to point out that the real indicators come NOT from the “snapshot” values of these evaluation points, but from the “changes”, or “deltas” from year to year. When a patient consistently passes the “clock face test” for 2 years and then suddenly fails the test, the PCP should be ready for a deeper evaluation of Dementia (See: “New Treatments/Validated Dementia Tests”).
What patients and care givers want/need to know
The Alzheimer’s Association reports that nearly 89 percent of Americans say that if they were exhibiting confusion and memory loss, they would want to know if the cause of the symptoms was Alzheimer’s Disease.
Of those aged 60 and over, 95 percent say they would want to know.
Over 97 percent say that if they had a family member exhibiting problems with memory loss, they would want them to see a doctor to determine if the cause was Alzheimer’s.
However, according to the Alzheimer’s Association, half (possibly more) of people with dementia have never received a diagnosis.
What do patients and care givers want to know
1. Is there anything I can do to prevent this from getting any worse?
2. How fast will this progress? What will happen next?
3. How do I tell people about this – or should I even tell people?
4. Are there opportunities to connect with others living with the disease?
5. How often should I see the doctor?
6. When is the best time to begin transitioning my family member to a care facility?
7. How can I help with Activities of Daily Living (ADLs)?
8. How do I get my family member to visit the doctor for regular appointments?
As a PCP, you will be pressed for answers to these and other questions. A great resource for you to give to your patients or care givers is the contact information for the Alzheimer’s Association. They have qualified staff ready to help. (See: “Resources”.)
Resources
The Alzheimer’s Association has a hot line for patients with questions open 24/7 – (800) 272-3900. This support system is FREE any time patients or care givers need help or have questions.
Website: www.alz.org.
These resources include:
– Free service
– Experienced staff knowledgeable about Dementia and Alzheimer’s, treatment options, and general information about aging and brain health.
– Master’s level care consultants available to provide help with decision-making support, crisis assurance, and education on issues families face every day.
– Help with finding resources for care and making legal, financial, and living arrangement decisions.
– 24/7 availability, 365 days a year.
– Provides assistance to more than 310,000 callers each year, with calls ranging from 5-45 minutes.
– Free Translation services accommodating more than 200 languages.
– Referrals to local community programs, services and ongoing support.
Primary Care Providers can download a consent form called the “Memory Loss Fax Referral.” This form can be filled out by the patient or care giver and faxed to the Alzheimer’s Association who will help the patient individually with facts, support and other local resources. The Association practices “coordination of care” with the PCP at all times if the patient consents.
Downloads and Numbers
For healthcare professionals: www.alz.org/hcps
Pocketcard App: www.alz.org/hcpapp
For care givers: www.alz.org/care
Find your local resources: www.alz.org/findus
Guidance for living after diagnosis: www.alz.org/IHaveAlz
HelpLine 24/7: (800) 272-3900
New treatments
Clinical Trials
Alzheimer’s Association TrialMatch® helps connect patients and healthy volunteers with ongoing clinical studies. Participation in clinical studies provides an opportunity to advance and accelerate medical research, contribute to the better health of future generations, and hopefully lead to a future without Alzheimer’s Disease.
TrialMatch offers:
– Free matching to clinical trials based on:
– Diagnosis
– Stage of the disease
– Location
– Access to more than 260 research studies that are currently underway at over 700 sites across the country
Website: www.alz.org/TrialMatch
Phone: (800) 272-3900
New Medications
The gut-wrenching truth is that while research is vigorous and ever-changing, we are years away from any kind of cure. Currently there are just a handful of Alzheimer’s drugs on the market, all approved more than a decade ago. They include Aricept, Namenda and Exelon. They can treat symptoms for a while, but do not affect the disease itself.
Researchers reported on the trials of three experimental drugs that use immune system weapons called monoclonal antibodies to clear the brain-clogging protein called amyloid. They think their results show that the drugs might work if they use a high enough dose and if they treat patients in the very early stages of the disease, before their brains are too damaged.
The three drugs being highlighted at the Alzheimer’s Association International Conference are called solanezumab, aducanumab and gantenerumab. (The “mab” at the end of the drug name stands for monoclonal antibody). They specifically attack amyloid8.
Aducanumab, also known as BIIB037 and made by Biogen, appears to be clearing the amyloid from the brains of patients, researchers told the meeting. There’s also some evidence that this might be improving test scores in the patients who got the very highest doses9.
Solanezumab, made by drug giant Lilly, disappointed patients, researchers and investors when it didn’t seem to help patients in 2012. But the developers kept studying it, trying to see if it maybe offered a small benefit when given to people early. They compared people who got the drug right away in the trial to those who had been taking placebo – giving the drug to all the patients to see if there might be a difference.
They found one. When they looked at the combined memory and thinking test scores of all the volunteers three years later, those who got the drug early seemed to be doing better. Those who got it later could not seem to catch up. That suggests a small, hard-to-measure benefit10.
Validated dementia tests
If you search the Internet for “validated dementia tests” you will find dozens of candidates. We have evaluated one in particular that we are very fond of and is perfect for “post-wellness” screening of MCI: CANS-MCI. In fact, we include it in our Clinical Triggerstm product routinely. Here is a research abstract from 2005 reporting the effectiveness of this product:
The Computer-Administered Neuropsychological Screen for Mild Cognitive Impairment (CANS-MCI), a computer administered, scored, and interpreted touch screen battery was evaluated for its ability to detect mild cognitive impairment. Subjects were three hundred ten community-dwelling elders who enrolled in an National Institute on Aging (NIA)-funded study. One-month test-retest reliability correlations were all significant (p<0.05–p<0.001). Concurrent validity correlations were all significant (p<0.001). A high level of diagnostic validity was attained relative to the Weschler Memory Scale-Revised (WMS-R) LMS-II test (p<0.001). Confirmatory factor analysis supported a three-factor model indicating the tests measure the intended cognitive dimensions of memory, language/spatial fluency, and executive function/mental control. Goodness-of-fit indicators were strong (Bentler Comparative Fit Index = 0.99; Root Mean Square Error of Approximation=0.055). Initial validation analyses indicate that the CANS-MCI shows promise of being a reliable, valid screening tool in determining whether more intensive testing for early cognitive impairment is warranted12.
Action Items for the PCP
1. Help your Dementia patients get access to the Alzheimer’s Association help desk and web sites.
2. Get the Medicare Annual Wellness Visit (AWV) completed on ALL your Medicare patients, every year. Data is king and your assessments will give you valuable insight into cognitive trends that indicate early stages of Alzheimer’s Disease.
3. Point your patients to ongoing clinical trials.
4. Stay abreast of current drugs and treatments for this disease.
References
1. Alzheimer’s Association publication and website
2. Ibid
3. Ibid
4. Ibid
5. Ibid
6. Ibid
7. Ibid
8. http://www.nbcnews.com/health/ aging/new-alzheimers-drugs-offer-exciting-possibilities-n396431
9. Ibid
10. Ibid
11. http://neuro.psychiatryonline.org/doi/abs/10.1176/jnp.17.1.98
Download a PDF copy of this Blog: WellTrackONE Blog – Dementia patients in the Primary Care Practice