Down syndrome is a condition in which a person is born with extra genetic material from chromosome 21, one of the 23 human chromosomes. In ways that scientists don’t yet understand, the extra copies of genes present in Down syndrome cause developmental problems and health issues. Down syndrome nearly always affects learning, language, and memory, but its impact varies widely from person to person. People with Down syndrome are valued members of their families and communities, and they contribute to society in a multitude of ways.
Prevalence and Prognosis
One in every 691 babies in the U.S. is born with Down syndrome, making Down syndrome the most common genetic condition. Approximately, 400,000 Americans have Down syndrome.
Due to advances in medical technology, individuals with Down syndrome are living longer than ever before (as many as 80% of adults with Down syndrome reach age 60, and many live even longer).
Down Syndrome and Alzheimer’s Disease (AD)
Studies suggest that more than 75% of those with Down syndrome aged 65 and older have Alzheimer’s disease, nearly 6 times the percentage of people in this age group who do not have Down syndrome. Because people with Down syndrome live, on average, 55 to 60 years, they are more likely to develop younger-onset Alzheimer’s (occurring before age 65) than late-onset Alzheimer’s (occurring at age 65 or older). Scientists think that the increased risk of dementia — like other health issues associated with Down syndrome — results from the extra genes present.
Symptoms of AD in Down Syndrome
In individuals with Down syndrome, changes in overall function, personality and behavior may be more common early signs of Alzheimer’s than memory loss and forgetfulness. Early symptoms include:
Reduced interest in being sociable, conversing or expressing thoughts
Decreased enthusiasm for usual activities
Decline in ability to pay attention
Sadness, fearfulness or anxiety
Irritability, uncooperativeness or aggression
Restlessness or sleep disturbances
Seizures that begin in adulthood
Changes in coordination and walking
Increased noisiness or excitability
References, Resources, and Support
To learn more about this important topic or to access resources and support, please visit the websites listed below:
Please join us for our 5th Annual Fall Conference “A Meaningful Life with Alzheimer’s Disease” in collaboration with Wayne State University’s Institute of Gerontology. We invite healthcare professionals, caregivers, family members, and individuals in the early stages of memory loss to be our guests at this educational conference taking place on Friday, November 21st from 7:30am-3:15pm at Schoolcraft College’s Vista Tech Center in Livonia, MI. Breakfast and lunch will be provided and five (5) continuing education units are available for social workers, nurses, nursing home administrators, occupational therapists, physical therapists and speech therapists.
Attend this event and you will gain powerful insight into the true experiences of living with dementia. In addition, presenters will discuss practical applications for implementing person driven care and methods to enhance quality of life. You will hear from individuals whose lives have been personally affected by this disease, be engaged through interactive activities, and discover resources that are available to assist families through the journey.
We look forward to seeing you there! To learn more and to register, please visit www.alz.org/gmc. Questions? Call (248) 996-1053 or email trusso@alz.org.
Dental care can be a challenge for individuals with Alzheimer’s because of their inability to understand the purpose of brushing teeth or to accept help from others.
Tips for helping the person with dementia manage dental care:
Provide short, simple instructions: “hold your toothbrush,” “put paste on the brush,” and “brush your top teeth,”etc.
Use a mirroring technique — hold tooth brush and show person how to brush his/her teeth or brush your teeth at the same time
Brush teeth or dentures after each meal and floss daily
Remove and clean dentures every night
Brush person’s gums, tongue and roof of mouth
If person refuses to open his/her mouth, try using oral hygiene aids available from the dentist to prop the mouth open
Strained facial expressions during dinner or refusal to eat may indicate oral discomfort
If you notice dental or gum problems, take the person to the dentist
Notify the dentist in advance that person has Alzheimer’s so that an oral care routine can be developed
When caring for an individual with Alzheimer’s disease at home, safety is an important concern. People living with Alzheimer’s can remain in their homes safely for a longer period of time if safety issues are addressed. Safety issues evolve as the disease progresses, so be sure to reevaluate safety periodically.
Tips for Home Safety
Accommodate for Visual Changes
Use contrasting colors on walls, trim and floors to help the person anticipate staircases and room entrances. This technique is also effective in the bathroom, where a white toilet and sink may be hard to see against a white floor and wall
Changes in levels of light can be disorienting. Try to maintain consistency in lighting the home and keep it well-lit
Add extra lighting in entries, areas between rooms, stairways and bathrooms
Diffuse glare by removing mirrors and glass-top furniture
Cover windows with blinds, shades, or sheer draperies as needed to control and diffuse the light
Use night lights
Avoid Injury during Daily Activities
Lower the temperature of tap water and monitor food temperatures if possible, to prevent the person from accidentally getting burned
Install walk-in showers, grab bars and non-skid decals on slippery surfaces
Provide the appropriate level of support to the person when taking prescription and over-the-counter medications
Beware of Hazardous Objects and Substances
Remove guns and ammunition from the home. Until guns and ammunition can be removed safely, lock them in a spot where the person with Alzheimer’s cannot access them. Never store weapons loaded.
Limit the use of mixers, grills, knives, and lawnmowers
Lock up hazardous materials that could be ingested
Supervise smoking and alcohol consumption, and limit or eliminate their use when possible
Move items that might cause a person to trip, such as unsecured throw rugs, floor lamps and coffee tables to create unrestricted areas for movement
Clean out the refrigerator regularly, and discard expired food
Prepare for Emergencies
Keep a list of emergency phone numbers and addresses by every phone, as well as a list of all prescriptions and dosages
Regularly check fire extinguishers and smoke alarms
Enroll the individual and caregivers in the Medic Alert + Safe Return program prior to any wandering incident. This helps protect the person with dementia, as well as ensuring that he or she will get needed care if something happens to a caregiver
Consider using Comfort Zone to monitor the person’s whereabouts. Caregivers or other family or friends can receive computerized alerts when the person with Alzheimer’s wanders out of a pre-set range, or can be checked in on throughout the day
As the disease progresses into the middle and late stages, take these steps to make dangerous places less accessible:
Lock or disguise hazardous areas
Install door locks out of sight, but only keep locked in this way when someone is home to help in case of an emergency
Use safety devices, such as childproof locks and door knobs, or hide door knobs with a cloth or painted mural
A planned hospitalization or unexpected health emergency can occur at any point during the disease progression and may or may not be the result of Alzheimer’s or another dementia.
A hospital visit or overnight stay can cause anxiety or discomfort for the person with the disease. The change from home to an unfamiliar environment and the added stress caused by medical interventions may lead to increased confusion or disorientation. Knowing what to expect during a hospital visit can help make the experience more comfortable for everyone.
Plan ahead
In the early stages of the disease, the person with dementia is able to make decisions on his or her own behalf and should be included in all conversations about medical care. It is important to address wishes for health care, including emergency medical treatment, as early as possible so that family and care team members can confidently implement the plan in the event the person is no longer able.
As the disease progresses, it will become increasingly difficult for the person with dementia to understand the purpose of hospital visits and medical intervention, and he or she will be unable to participate in the health care planning process. The care partner or a member of the care team should always be present to explain the reason for the hospital visit or medical intervention as much as possible and provide support and act as an advocate on their behalf.
Consider the following:
Prepare an emergency kit with legal paperwork and current medical information. This information should be available in an easily accessible place such as in an envelope attached to the refrigerator. Some items include:
A list of current medications and allergies
Copies of legal papers (e.g. living will, advance directives, power of attorney)
Insurance information
Name and phone number of physician
Names and phone numbers of emergency contact and additional care team members
Request for brain autopsy or organ donation
A physician’s note confirming the diagnosis
Review current legal documents stating preferences for health care, including life-sustaining treatment. The following documents may help prevent an emergency decision from taking place and provide assurance that the wishes of the person with the disease are upheld.
Power of Attorney for Health Care: Names a health care agent to make health care decisions on behalf of the person with dementia when they are unable.
Living Will: A type of advance directive that includes preferences for medical treatment, including life-prolonging treatments.
Medical Release of Information: Ensures that a doctor can share information with the person’s family member or friend. This can be beneficial to those who are helping coordinate care.
Hospital Visitation Form: For those in a domestic partnership, hospitals in some states may enforce strict visitation laws and/or require special forms if relationship is not legally recognized in that state.
Do Not Resuscitate (DNR): A physician order to prevent any attempts at revival, particularly if CPR or defibrillation is needed. Without it, medical professionals are required to perform resuscitation.
Prior to hospitalization
Share information regarding the diagnosis, other medical conditions or allergies with the entire medical team.
Provide information about personal habits, dietary preferences or any environmental needs like a private room that would make the experience more comfortable.
Ask questions
Which procedures will be performed and how? What are the risks and benefits, expected results and expected length of recovery?
Is assessment or treatment available at an outpatient clinic?
How long is hospitalization required?
If anesthesia is used, how will this affect cognition?
What are the visiting hours? Are extended hours available?
Hospital discharge planning
At the end of a hospital stay, health care providers will make recommendations for long-term care needs and recovery following hospitalization. A member of social services or a discharge planner may also be involved if the care plan calls for in-home services, referrals to rehabilitation facilities or outpatient services. Post-operational or discharge orders may involve several components including new medication, therapy, wound care or monitoring.
The following questions may help the individual and their car team to prepare for discharge:
Which activities may require more assistance after discharge?
When is it safe to engage in physical activity?
What is the safest way to manage pain?
Have medications changed and how often should they be administered? Which signs or symptoms are causes for concern? Who should be contacted?
Is a follow-up visit necessary? When will this occur?
It’s normal to feel loss when someone you care about has Alzheimer’s disease. It’s also normal to feel guilty, abandoned, and angry. It’s important to acknowledge these emotions and know that you may start to experience them as soon as you learn of the diagnosis.
Alzheimer’s gradually changes the way you relate to the person you know and love. As this happens, you’ll mourn him or her and may experience the stages of grieving: denial, anger, guilt, sadness, and acceptance. These stages of grief don’t happen neatly in order. You’ll move in and out of different stages as time goes on. Some common experiences in the grieving process include:
Denial
Hoping that the person is not ill
Expecting the person will get better
Convincing yourself that the person hasn’t changed
Attempting to normalize problematic behaviors
Anger
Frustration with the person
Resenting the demands of caregiving
Resenting family members who can’t or won’t help provide care
Feeling abandoned
Guilt
Wondering if you did something to cause the illness
Feeling bad because you’re still able to enjoy life
Feeling that you’ve failed if, for example, you can’t care for the person with dementia at home
Having negative thoughts about the person, wishing that he or she would go away or even wishing that he or she would die
Regretting things about your relationship before the diagnosis
Having unrealistic expectations of yourself, with thoughts like: ‘I should have done…” “I must do everything for him or her’ or “I must visit him or her every day.”
Sadness
Feeling overwhelmed by loss
Crying frequently
Withdrawing from social activities or needing to connect more frequently with others
Withholding your emotions or displaying them more openly than usual
Acceptance
Learning to live in the moment
Finding personal meaning in caring for someone who is terminally ill
Understanding how the grieving process affects your life
Appreciating the personal growth that comes from surviving loss
Finding your sense of humor
It’s important to take care of yourself during this time.
Face your feelings
Think about all of your feelings — positive as well as negative
Let yourself be as sad as you want
Accept feelings of guilt — they’re perfectly normal
Work through your anger and frustration
Prepare to experience feelings of loss more than once as the person with dementia changes
Claim the grieving process as your own. No two people experience grief the same way. Some people need more time to grieve than others. Some realize their feelings right away, while others may not grieve until caregiving has ended. Your experience will depend on the severity and duration of the person’s illness, on your own history of loss and on the nature of your relationship with the person who has Alzheimer’s.
Know that it’s common to feel conflicting emotions, such as love and anger, at the same time
Consider writing in a journal as a way to help you express your feelings.
Accept yourself
Think about what you expected from yourself. Are your expectations realistic?
Ask yourself whether your feelings of guilt are justified and whether you can do something differently to change them.
Accept things that are beyond your control.
Make responsible decisions about the things you can control.
Think about the fond memories you have of the person.
Allow yourself to feel good.
As time permits, get involved or stay involved in activities that you enjoy.
Turn to spiritual beliefs, if you choose, for consolation.
Get support
Talk with someone you trust about your grief, guilt and anger — a counselor, pastor, family member or friend.
Connect with other caregivers, family members and friends affected by Alzheimer’s.
When you talk with other caregivers, share your emotions. Cry and laugh together. Don’t limit conversations to caregiving tips.
Know that some people may not understand your grief. Most people think grief happens when someone dies. They may not know that it’s possible to grieve deeply for someone who is still alive but terminally ill.
Get support from others in similar situations by attending a support group or joining ALZConnected.
Watch this video to learn more about what researchers are doing on a global level to help win the fight against Alzheimer’s disease. Check out the full 2013-2014 Alzheimer’s Disease Progress Report here.
Scientists have made enormous strides in understanding how Alzheimer’s disease affects the brain. Many of these insights point toward new therapies and improved ways to diagnose the disease and monitor its progression.
At any given time, dozens of studies are recruiting participants to help explore these exciting new approaches. Every clinical study contributes valuable knowledge, regardless of whether the experimental strategy works as hoped.
Without study participants, however, progress is stalled, and scientists report growing difficulty finding enough volunteers to complete these studies.
If you or a friend or family member has Alzheimer’s or another dementia — or even if you don’t — you can help advance knowledge about this illness. By participating in a clinical study, you can help new treatments, preventive strategies and diagnostic tools to become a reality.
What is a clinical study?
A clinical study is any medical research project involving human volunteers. Research into improved approaches usually begins with laboratory work or animal studies. Following early success with these methods, new strategies must demonstrate their effectiveness in the final proving ground of human testing.
What is a clinical trial?
A clinical trial is a specific type of study in which one group of volunteers gets an experimental treatment, while a similar group gets a placebo ( a look-alike “sugar pill”). Scientists evaluate the effect of the new treatment by comparing outcomes in the two groups.
Phases of clinical trials
The U.S. Food and Drug Administration (FDA), which regulates medical products and drugs, oversees a rigorous process for testing experimental treatments that is based on sequential phases. The treatments must perform well enough in each phase to progress to the next one. If a treatment performs adequately in all stages through Phase III, the FDA reviews the data and determines whether to approve the drug for use in general medical practice.
Phase 1 trials, the first stage of human testing, typically enroll fewer than 100 volunteers. These studies are primarily concerned with assessing the safety of a drug and whether it has risks or side effects.
Phase II trials enroll up to a few hundred volunteers with the condition the drug is designed to treat. These studies provide further information about the safety of the drug and focus on determining the best dosage. Scientists also watch for signs of effectiveness, but Phase II trials are generally too small to provide clear evidence about benefit.
Phase III trials may enroll several hundred to thousands of volunteers, often at multiple study sites nationwide or internationally. Phase III trials provide the chief evidence for safety and effectiveness that the FDA will consider when deciding whether to approve a new drug.
Phase IV trials, also called post-marketing studies, are often required by the FDA after a drug is approved. The trial sponsor must monitor the health of individuals taking the drug to gain further insight into its long-term safety effectiveness and the best way to use it.
How to find a study near you
Alzheimer’s Association TrialMatch is a clinical studies matching service. TrialMatch uses information about your diagnosis, location and preferences to match a person with current clinical studies. Finding the right trial can be done over the phone or online. Once a match is found, and with your permission, a TrialMatch specialist will contact you to answer questions.
If you would like to consider participating in a clinical study, call 1-800-272-3900 or visit alz.org/trialmatch. More information about clinical studies can also be found at clinicaltrials.gov.
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