Talking To Children And Young People About Dementia
Finding out that someone close to you has dementia is difficult for everyone. We all need time to adjust and come to terms with our feelings.
Children and young people are no different. However, it can be harder for them, as they may not properly understand what dementia is, or they might find it harder to cope with their feelings.
They might also be coping with things in their life they find difficult, or changes such as moving classes at school, puberty, exams, or university.
Can Alzheimers Disease Be Inherited
In the vast majority of cases , Alzheimers disease is not inherited.
The most important risk factor for Alzheimer’s disease is age. Because Alzheimer’s disease is so common in people in their late 70s and 80s, having a parent or grandparent with Alzheimer’s disease at this age does not change your risk compared to the rest of the population.
However, if somebody has developed Alzheimers disease at an earlier age there is a greater chance that it may be a type of Alzheimers disease that can be passed on.
When Should We Tell Children About Dementia
It can be reassuring for children and young people to understand what the problem is. If they are not told the truth about what is happening sooner, they may find it difficult to trust what someone close to them says later on. It may also be more upsetting for the child or young person to find out about a diagnosis later, than to cope with the reality of what is happening now.
Seeing how people around them cope with difficult situations can also help children and young people learn valuable skills about dealing with tough and distressing situations. This can help them to better manage painful emotions.
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When Someone You Love Has Alzheimer Disease
You might feel sad or angry or both if someone you love has Alzheimer disease. You might feel nervous around the person, especially if he or she is having trouble remembering important things or can no longer take care of himself or herself.
You might not want to go visit the person, even though your mom or dad wants you to. You are definitely not alone in these feelings. Try talking with a parent or another trusted adult. Just saying what’s on your mind might help you feel better. You also may learn that the adults in your life are having struggles of their own with the situation.
If you visit a loved one who has Alzheimer disease, try to be patient. He or she may have good days and bad days. It can be sad if you can’t have fun in the same ways together. Maybe you and your grandmother liked to go to concerts. If that’s no longer possible, maybe bring her some wonderful music and listen together. It’s a way to show her that you care and showing that love is important, even if her memory is failing.
Phase Ii: Biospecimen Collection
Biospecimen collection: 4961 participants who completed phase I and had a FH of AD were solicited via email to self-collect and ship back either dried blood spots on a 903 Protein Saver Card or a saliva sample using an Oragene Discover kit . Consenting participants were sent kits containing easy to use instructions and everything they needed to collect, and ship DBS or stabilized saliva back to our laboratory. Received DBS were stored at 4°C. Participants who unable to collect enough blood for adequate DBS were sent the saliva kit instead. For saliva, DNA was extracted and purified as per the Oragene Discover kits instructions. Extracted DNA was stored at 20°C.
Icipating In Alzheimer’s Disease Clinical Trials
Everybody those with Alzheimers disease or MCI as well as healthy volunteers with or without a family history of Alzheimers may be able to take part in clinical trials and studies. Participants in Alzheimers clinical research help scientists learn how the brain changes in healthy aging and in Alzheimers. Currently, at least 270,000 volunteers are needed to participate in more than 250 active clinical trials and studies that are testing ways to understand, diagnose, treat, and prevent Alzheimers disease.
Volunteering for a clinical trial is one way to help in the fight against Alzheimers. Studies need participants of different ages, sexes, races, and ethnicities to ensure that results are meaningful for many people. To learn more about clinical trials, watch this video from NIH’s National Library of Medicine.
NIA leads the federal governments research efforts on Alzheimers. NIA-supported Alzheimers Disease Research Centers throughout the U.S. conduct a wide range of research, including studies of the causes, diagnosis, and management of the disease. NIA also sponsors the Alzheimers Clinical Trials Consortium, which is designed to accelerate and expand studies and therapies in Alzheimers and related dementias.
To learn more about Alzheimers clinical trials and studies:
- Talk to your health care provider about local studies that may be right for you.
Watch videos of participants in Alzheimers disease clinical trials talking about their experiences.
Inheriting The Alzheimers Gene
The gene that is largely responsible for increasing the risk of Alzheimers is called the Apolipoprotein E gene, or the apoE4 gene for short. This gene is involved in making a protein that helps carry cholesterol and vitamins throughout the body . This gene variant does not cause Alzheimers, but rather, is thought to increase the risk of getting the disease.
Although its not completely clear exactly how the apoE4 gene increases the risk of getting Alzheimers, scientists believe it is associated with multiple factors, including environmental factors , genetics and lifestyle factors .
Inheriting one copy of the Alzheimers gene from one parent is said to raise the risk of getting Alzheimers and getting two copies increases a persons risk even more. But, its very important to understand that not everyone who gets the apoE4 gene will be diagnosed with the disease.
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Taking Part In Genetic Testing
After questioning the likeliness of inheriting Alzheimers, perhaps the second most common question is: Should I take part in genetic testing? Dr. Marshall answers this question, saying, Its not going to be helpful since it wont tell you whether you will develop the disease. It will only tell you if you are at a greater or lower risk.
Dr. Marshall elaborates, saying that often the testing is complex and that many companies are ill-equipped to perform the testing. He also points out that if a person does test positive for a genetic form of Alzheimers , it could impact their ability to procure some types of insurance.
In conclusion, its always best to consult with a professional, such as a trusted healthcare provider, before considering any type of genetic testing.
Does the Alzheimers gene run in your family? Which inheritable traits are you most concerned about? Wed like to hear your thoughts in the comments below.
How To Understand The Difference And Why It Matters
by Kathleen Fifield, AARP, Updated June 15, 2020
Doctors usually rely on observation and ruling out other factors to diagnose Alzheimer’s.
En español | The terms dementia and Alzheimers have been around for more than a century, which means people have likely been mixing them up for that long, too. But knowing the difference is important. In the simplest terms, one is broader than the other. If the two were nesting dolls, Alzheimers would fit inside dementia, but not the other way around. While Alzheimers disease is the most common form of dementia , there are several other types. The second most common form, vascular dementia, has a very different cause namely, high blood pressure. Other types of dementia include alcohol-related dementia, Parkinsons dementia and frontotemporal dementia each has different causes as well. In addition, certain medical conditions can cause serious memory problems that resemble dementia.
A correct diagnosis means the right medicines, remedies and support. For example, knowing that you have Alzheimers instead of another type of dementia might lead to a prescription for a cognition-enhancing drug instead of an antidepressant. Finally, you may be eligible to participate in a clinical trial for Alzheimers if youve been specifically diagnosed with the disease.
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Coping With Changes In Behavior And Personality
As well as changes in communication during the middle stages of dementia, troubling behavior and personality changes can also occur. These behaviors include aggressiveness, wandering, hallucinations, and eating or sleeping difficulties that can be distressing to witness and make your role as caregiver even more difficult.
Often, these behavioral issues are triggered or exacerbated by your loved ones inability to deal with stress, their frustrated attempts to communicate, or their environment. By making some simple changes, you can help ease your loved ones stress and improve their well-being, along with your own caregiving experience.
Stage : Severe Decline
As Alzheimer’s progresses, your loved one might recognize faces but forget names. They might also mistake a person for someone else, for instance, think their wife is their mother. Delusions might set in, such as thinking they need to go to work even though they no longer have a job.
You might need to help them go to the bathroom.
It might be hard to talk, but you can still connect with them through the senses. Many people with Alzheimer’s love hearing music, being read to, or looking over old photos.
At this stage, your loved one might struggle to:
- Feed themselves
- Changes in their sleeping patterns
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Alzheimers And Inheritable Traits
Just how likely are family members of those with Alzheimers to get the disease themselves? People think that if Dad and Mom or an aunt or uncle had Alzheimers, they are doomed. But, no, thats not true, says Dr. Gad Marshall, assistant professor of neurology at Harvard Medical School.
Even though family history adds to the overall risk, age still usually trumps it quite a bit. It means your risk is higher, but its not that much higher if you consider the absolute numbers.
As Dr. Marshall notes, the most common form of the disease is age-related Alzheimers, which means the risk of the disease comes from a persons age and not their genetic predisposition. The older a person is, the higher risk they have of getting Alzheimers, and this pertains to everyone, whether theyve had a family member with the disease or not.
The statistics show that after age 65, everyone develops a 2% increased risk per year of getting diagnosed with Alzheimers. Other Harvard Health statistics show that:
Genetic Testing Not Helpful
When a relative is diagnosed with dementia later in life, family members often wonder if they should be tested for the “Alzheimer’s gene.” The short answer is no. “It can be a quick no or a long no, with more explanation, but the answer is nearly always no,” Dr. Marshall says. “It’s not going to be helpful, since it won’t tell you whether you will develop the disease. It will only tell you if you are at a greater or lower risk.”
For Alzheimer’s disease that begins later in lifethe vast majority of casesa gene called apolipoprotein E is associated with greater risk for dementia. If you inherit one copy of APOE4, your risk triples. If you have two copies, your risk is 10 to 15 times higher .
But having APOE4 does not mean you will definitely develop dementia. Among people who age normally into their 70s, about 25% still have one or more copies of the risk gene. Nor does the absence of APOE4 protect you: about 35% of people with Alzheimer’s don’t have one of the risk genes.
This means that if genetic testing reveals that you have one or more copies of APOE4, it will not tell you what you really want to know: will you definitely get Alzheimer’s diseaseor will you not? Knowing that you have the risk gene could instill fear and negatively influence your life decisions.
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How Is Childhood Alzheimers Diagnosed
It can take years to be diagnosed with one of the medical conditions associated with the term childhood Alzheimers. These diseases are very rare, so a child may be diagnosed with other, more common conditions first.
Its important to take your child to regular wellness checkups so that their developmental progress can be monitored, and any delays can be identified as early as possible.
However, unlike more common conditions, children with NPC or MPS III will develop more symptoms over time as their conditions worsen.
Eventually, theyll develop symptoms that cant be explained by their previous diagnosis. This often prompts parents to seek out a new, correct diagnosis.
Children with these conditions often need genetic testing before they get a diagnosis. They might need to visit specialists before there are answers about their condition. Fortunately, testing is getting easier.
Children suspected of having NPC or MPS III used to need biopsies to confirm the condition. Recent developments have allowed for a diagnosis with a standard blood test.
Alzheimers Disease Vs Other Types Of Dementia
Dementia is an umbrella term for a range of conditions that involve a loss of cognitive functioning.
Alzheimers disease is the most common type of dementia. It involves plaques and tangles forming in the brain. Symptoms start gradually and are most likely to include a decline in cognitive function and language ability.
To receive a diagnosis of Alzheimers, a person will be experiencing memory loss, cognitive decline, or behavioral changes that are affecting their ability to function in their daily life.
Friends and family may notice the symptoms of dementia before the person themselves.
There is no single test for Alzheimers disease. If a doctor suspects the presence of the condition, they will ask the person and sometimes their family or caregivers about their symptoms, experiences, and medical history.
The doctor may also carry out the following tests:
- cognitive and memory tests, to assess the persons ability to think and remember
- neurological function tests, to test their balance, senses, and reflexes
- blood or urine tests
- a CT scan or MRI scan of the brain
- genetic testing
A number of assessment tools are available to assess cognitive function.
In some cases, genetic testing may be appropriate, as the symptoms of dementia can be related to an inherited condition such as Huntingtons disease.
Some forms of the APOE e4 gene are associated with a higher chance of developing Alzheimers disease.
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What Are The Symptoms Of Early
For most people with early-onset Alzheimer disease, the symptoms closely mirror those of other forms of Alzheimer disease.
Withdrawal from work and social situations
Changes in mood and personality
Severe mood swings and behavior changes
Deepening confusion about time, place, and life events
Suspicions about friends, family, or caregivers
Trouble speaking, swallowing, or walking
Severe memory loss
Dont Neglect Your Own Needs
By always focusing so diligently on your loved ones needs throughout the progression of their dementia, its easy to fall into the trap of neglecting your own welfare. If youre not getting the physical and emotional support you need, you wont be able to provide the best level of care, and youre more likely to become overwhelmed and suffer burnout.
Plan for your own care. Visit your doctor for regular checkups and pay attention to the signs and symptoms of excessive stress. Its easy to abandon the people and activities you love when youre mired in caregiving, but you risk your health and peace of mind by doing so. Take time away from caregiving to maintain friendships, social contacts, and professional networks, and pursue the hobbies and interests that bring you joy.
Explaining Dementia To Children And Young People
When a close family member or friend develops dementia, children and young people need support. Think about who should tell them, and what and when you should tell them. You may need to help them understand what dementia is, and what a diagnosis means for their relationship.
Explaining dementia to children and young people
When a close family member or friend develops dementia, it is likely that every member of the family will be trying to cope with their own feelings.
Children and young people also need time to adjust to the news. It can be particularly hard for them, and they may need some help and support to talk about and understand dementia.
Explaining dementia to children and young people can also feel challenging for the adults and carers who support them. It can be hard to know how much you should tell them about dementia, or how best to explain things.
Emotion And Behavior Treatments
The emotional and behavioral changes linked with Alzheimers disease can be challenging to manage. People may increasingly experience irritability, anxiety, depression, restlessness, sleep problems, and other difficulties.
Treating the underlying causes of these changes can be helpful. Some may be side effects of medications, discomfort from other medical conditions, or problems with hearing or vision.
Identifying what triggered these behaviors and avoiding or changing these things can help people deal with the changes. Triggers may include changing environments, new caregivers, or being asked to bathe or change clothes.
It is often possible to change the environment to resolve obstacles and boost the persons comfort, security, and peace of mind.
The Alzheimers Association offer a list of helpful coping tips for caregivers.
In some cases, a doctor may recommend medications for these symptoms, such as:
- antidepressants, for low mood
develops due to the death of brain cells. It is a neurodegenerative condition, which means that the brain cell death happens over time.
In a person with Alzheimers, the brain tissue has fewer and fewer nerve cells and connections, and tiny deposits, known as plaques and tangles, build up on the nerve tissue.
Plaques develop between the dying brain cells. They are made from a protein known as beta-amyloid. The tangles, meanwhile, occur within the nerve cells. They are made from another protein, called tau.
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