Early onset Alzheimer’s can be an enormously difficult diagnosis to come to terms with. Many people who are diagnosed are in the middle of a career, raising a family, and pursuing new ventures when this disease unexpectedly disrupts life as they know it.
New studies have found that an early diagnosis could lead to more positive experiences with treatment and there are ways to slow the rate of progression so patients can maintain a sense of normalcy for as long as possible.
Still, there is no cure for Alzheimer’s disease, so anyone who has received a diagnosis will have to re-evaluate many things in their life in order to best prepare for what’s to come.
On today’s episode of All Home Care Matters, we’ll be discussing all you need to know about early onset Alzheimer’s. We know how difficult this disease can be to face – so we want you to know that we are here to support you through the ups and downs of this new and trying journey.
This episode will be a little different. In addition to discussing what early onset Alzheimer’s is and how it affects the brain, what symptoms to look for and what options are for treatment, we’ll also talk about the tougher stuff. How to speak to your kids about a diagnosis. How to handle friends, family, and a possible stigma that you might face outside of your home. How to plan ahead financially and legally, while you’re still in the early stages of the disease.
We know that this is a diagnosis that interrupts your world. That’s why it’s so important to take the time to prepare for the future and implement a healthy lifestyle with a treatment plan. That way, you can focus on spending time with your family and taking on new and cherished experiences, instead of spending all of your time worrying and stuck in the dark about what comes next.
Many people with early on-set Alzheimer’s feel alone after a diagnosis. Watching friends and family continuing to live their lives, getting to focus solely on their careers and family, can cause a great deal of resentment and even depression.
One key difference, on an emotional level, between Alzheimer’s and early onset Alzheimer’s is that those experiencing the former are more likely to have peers in similar situations – whether friends, friends of friends, or a community in a senior living facility. For those with early onset, the world can feel like it’s coming to a halt for you and only you.
That’s why I want to start by saying this: even though it may not feel like it now, you are not alone. According to alz.org, it’s estimated that about 200,000 people in the United States have early onset. That’s 5% of the 5 million Americans living with Alzheimer’s.
If you are at all interested, in can be enormously helpful to meet others who are facing similar circumstances. There are support groups available for patients with the diagnosis as well as counseling services, gathering events, and more. Look into your local community to see what resources might be available to you. Surrounding yourself with others who know what you are going through could help you to feel supported, encouraged, and not alone.
Now, before we get any further, let’s get into the basics. When anyone under the age of 65 is diagnosed with Alzheimer’s disease, it’s considered early onset, or younger onset. A person can be in their thirties, forties, or fifties. More rarely, a person might get the disease as early as their twenties.
In the brain, early onset does not look different from standard Alzheimer’s. In both cases, the brain is no longer able to function normally because of nerve cell death and tissue loss caused by a build-up of protein fragment clusters between nerve cells. At the same time, a dead nerve cell contains tangles – or twisted protein strands.
The protein fragment clusters are known as plaques. When the plaques and tangles crowd the brain together, it caused mixed-up signaling that can trigger immune system cells, which consume the dead or dying cells and trigger inflammation.
In the end, the brain is unable to properly process nutrients or other important supplies. That leads to cell death. The dead cells tend to crowd in the areas of the brain that affect thinking, planning, learning, and memory. That’s why Alzheimer’s patients eventually lose their memory altogether. To learn more about how Alzheimer’s affects the brain, check out our episode on understanding Alzheimer’s and dementia.
While it is estimated that around 200,000 Americans are living with early onset, that number is likely even greater. The disease is often overlooked or misdiagnosed by doctors, who simply do not consider Alzheimer’s or dementia on their younger patients. Sometimes, a patient can get multiple misdiagnoses from multiple doctors before being diagnosed with early onset. This means that many people do not know they have the disease until they are already in the later stages.
If you believe you may have the disease, receiving a diagnosis can be a painful and disheartening process. That’s why it’s so important to advocate for yourself and push your doctors to evaluate you for early onset if you are suffering from memory problems.
If you are truly worried and your doctor is simply not considering early onset even after you specifically ask, make an appointment with an Alzheimer’s specialist. They are much more likely to give you comprehensive, conclusive evaluation. At the very least, they will help you to feel validated and comforted – which can mean the world after enough doctor appointments that felt like they were going nowhere.
It’s important to note that early onset is not something you can take a test for like strep throat or the flu. It can only be diagnosed after a careful and drawn-out medical evaluation, in which the doctor will ask you a series of questions about your symptoms, memory, and quality of life, before making a definite diagnosis. Remember to be honest with your answers and share anything memory related, even if you feel it isn’t relevant, because too much information is always better than not enough – especially when going after a diagnosis that is difficult to come by at a younger age.
There are two types of early onset Alzheimer’s. The first type is Common Alzheimer’s Disease, which is the most typical form among both early onset patients and patients 65 and older. This version of the disease progresses at much the same rate in younger patients as it does in older ones. Unfortunately, researchers have not yet determined what causes Common Alzheimer’s Disease, and there are no risk factors that might lead to the disease. Common Alzheimer’s early onset could happen to anyone.
The other type is early onset familial Alzheimer disease. This is much rarer. Patients with this type of Alzheimer’s usually have a parent or parents that have also had the disease. A patient’s siblings and children have a 50/50 chance of getting the disease themselves at an atypically young age. A person who has two parents with the disease is at a higher risk than someone who only has one parent with it.
Researchers have pinpointed two types of genes that influence a person’s likelihood to get familial Alzheimer’s disease. These are risk genes and deterministic genes.
If a person has risk genes, then they have an increased chance of developing the disease, but it is not guaranteed. Risk genes include APOE-e4, APOE-e2, and APOE-e3. Those with APOE-e4 have a 40-65% chance of eventually being diagnosed with Alzheimer’s. According to alz.org, about 2% of the US population has this gene.
Deterministic genes guarantee that a person will inherit Alzheimer’s. This type of gene is exceptionally rare – only a few hundred families have been found to pass it on worldwide. Deterministic genes lead to early onset Alzheimer’s for patients in the early 40’s to mid 50’s.
Sadly, early onset cases tend to progress more quickly than standard Alzheimer’s in older patients. This is because in patients with early onset, the plaque and tangle build up tends to be much larger. Alzheimer’s expert Dr. Thomas Wisniewski explained to CBS news in 2016 that, “the pathology tends to be more extreme in early-onset. Many can deteriorate more quickly, so it is a much more aggressive disease…when you look at the pathology, it’s just like late-onset Alzheimer’s disease, but there’s just more of it.”
This is the often-brutal reality for patients facing the early-onset form of this disease. However, because recent studies have found that early diagnosis can lead to better treatment options and a longer delay of progression, it’s essential that patients look for symptoms and report them to a doctor as soon as they notice any.
This is especially true for people whose parents or siblings have had Alzheimer’s or early-onset, but it is also true for anyone else, since there is no known cause for the majority of these cases.
Symptoms of early onset are quite similar to other versions of the disease. They include forgetting newly learned information, important dates, and even names of people close to them. If a person asks for information to be repeated multiple times on a semi-regular basis, this could be a sign. If a person is failing to remember something they used to know by heart – like a favorite recipe, hobby, or craft that they should be able to do with their eyes closed – that’s another sign. If a person is forgetting to pay their bills or stay on top of other important responsibilities, and gets confused and overwhelmed when they try, this is another sign.
Other symptoms include wandering or getting lost, forgetting how you got from one place to another, losing track of dates, forgetting important events, having trouble socializing, struggling to remember certain words in conversation, vision issues or depth perception issues, poor judgement, and slight mood and personality changes.
In the later stages, symptoms include major mood swings and drastic changes to personality, increased paranoia – particularly surrounding close friends, family members, and caregivers – difficulty speaking and swallowing, mobility issues, and severe loss of memory.
If any number of these symptoms sound like you – don’t wait to book an appointment with an Alzheimer’s specialist. Again, the sooner you can get diagnosed, the better your options for treatment will be. Early diagnosis really is crucial to maintaining a normal quality of life for as long as possible.
While early onset Alzheimer’s does not have a cure, there are treatment options that can slow the progression of the disease and help patients maintain a good quality of life for longer than if no treatment was implemented.
Treatments usually consist of a mixture between medicines, physical activity, and healthy living. Common prescribed medications are Donepezil, Rivastigmine, Galantamine, and Memantine. Medicines can help a person for as long as months or even years, especially when combined with lifestyle changes.
Healthy lifestyle choices for patients with early onset are quite similar to those with standard Alzheimer’s disease. This means making a consistent effort to care for your physical, mental, and emotional wellbeing.
Alz.org recommends that patients find a physician that they truly trust and then build a relationship with them through regular check-ups. When your doctor is intimately familiar with your case, they will be more likely to notice any changes, even the subtle ones, that might require a change in treatment plan. At the same time, the more you trust your doctor, the more likely you are to call when you need guidance or have a medical related question.
You need to come up with a diet and exercise routine that will keep you moving, alert, and energized. The healthier and stronger your body is, the better equipped your mind will be to delay the progression of this disease. You can work with your doctor to establish a diet and exercise plan that best fits your individual needs.
There are also nutritionists, physical therapists, and personal trainers who specialize in Alzheimer’s patients. Be sure to work closely with an expert so you know that you are not over or under working yourself, and you are staying as healthy as possible.
All Alzheimer’s patients should drink less alcohol and more water and eat more fruits and vegetables and less junk food. When it comes to exercise, it’s usually recommended that patients engage in mild-to-moderate routines that will increase endorphins and help the body and mind without over-exerting the patient. According to alz.org, “physical activity may help delay or slow decline in thinking skills, reduce stress, possibly improve symptoms of depression, and may even reduce the risk of falls. Some evidence also suggests that exercise may directly benefit brain cells by increasing blood and oxygen flow. Even stronger evidence suggests exercise may protect brain health through its proven benefits to the cardiovascular system.”
The same site recommends trying exercises like aerobics, walking, biking, tennis, or even walking. Remember to consult your medical team before you engage in any exercise, though, because they will best know what you are capable of and what might help you the most.
In addition to diet and exercise, mental stimulation can play a big role in strengthening your brain and slowing cognitive decline. Try taking a class, picking up a new hobby, playing board games, or reading. Anything to stimulate your brain and get you thinking and problem solving is beneficial.
You also need to care for yourself emotionally. This is a diagnosis that can be devastating to live with, especially when you’re in the prime of your life, raising kids and engaging in a career. Early onset patients are liable to depression, anxiety, mood swings, and extreme feelings of loneliness. While you should certainly give yourself permission to feel whatever you need to during this difficult time, it is important to note that depression can actually lead to bigger health issues and even quicken the progression of your disease.
To help with these feelings, you have many options. You can join a support group for other patients with early onset so you can be part of a community that understands what you are going through. You can meet with a counselor or therapist regularly – especially one that specializes in Alzheimer’s and dementia. You can take time every day to do something you love, just for you. You can spend more time outside on walks, exercising, or just enjoying the fresh air. You can meet with trusted friends and family members and confide your fears and worries to them.
Early onset Alzheimer’s can hit so much harder when you are a parent in the middle of raising a family. Many early onset patients are young mothers and fathers who have to grapple with what their diagnosis will mean for their family. For some, this is the scariest part. No parent wants their child to go through grief, loss, or heartache of any kind – and to know that this disease will affect them can feel devastating. At the same time, many parents are left wondering if they will miss important milestones in their children’s lives or be able to be there for them as they grow up. Harboring these fears is a terrible thing for any parent to go through.
By caring for your physical and emotional needs, you will more likely be in a better place to care for your children longer and stay strong for them when you want to be. As hard as it might feel, do not neglect your own needs. The more you care for yourself, the better equipped you’ll be to care for your children.
Whether or not to talk to your child about your diagnosis will depend on a variety of factors – but ultimately, the decision is a deeply personal one that can only be made by you. How much you share might depend on your child’s age and what they are capable of digesting and understanding.
Children and teenagers alike might respond with a myriad of emotions. These can range from confusion, sadness, anger, curiosity, worry, guilt, embarrassment, or even jealousy as they are having to share their attention with their struggling parent. Teenagers in particular might withdraw from family and friends, have a hard time in school, stay away from home because it is too hard to see their parent suffer, avoid inviting friends over, and easily jump to anger or even aggression.
Remember that your child or teenager is grieving. This diagnosis means a loss of the way life used to be – and it is extremely heart wrenching for most children to watch their parents change and decline. Be patient with your child and give them space to feel how they need to.
There are many ways you can help your child to cope with this diagnosis and their changing lives. Offering patience, love, and support can mean everything. When your child knows they can go to you or their other parent or caretaker with their questions and their big feelings, then they are less likely to seek an outlet elsewhere.
It might help to arrange therapy or counseling for your child, or even group therapy for other kids who are going through the same thing. Just as building your own community is so beneficial, it will make children feel far less alone to know others can relate to them.
Provide your children with a space for their feelings – whether through art, music, or journaling. Educate them about the disease and what they can expect as time goes on, so they are not taken by surprise as the condition worsens. Be open and honest with them.
Family activities can also be enormously helpful, as they allow a child or teenager to hold onto a sense of family and stability – so they feel less lost and scared that they are losing their foundation. Activities can include walking, hiking, going to movies, playing or listening to music, playing board games. You can look through family photo albums together, read together, even do housework together. The more routine family time can be, the better.
In the description of this episode, you’ll find further resources that can help you navigate parenthood with your new diagnosis. These include a list of common questions and answers, activity ideas, and advice for getting through those tough conversations.
In addition to parenthood, you might be struggling with stigma from family and friends. Because early onset is so uncommon, you might find that those around you are getting impatient with you or acting frustrated when you are unable to do things as fast or as easily as you used to. To help with this stigma, make sure to educate your loved ones about your disease. Provide them with resources that will help them to understand what you are going through and what they can expect in the months and years ahead. You can even arrange a meeting with your care team and your loved ones, to answer any of their questions and explain your individual situation on a deeper level.
In the early stages of the disease, it’s essential to plan ahead for the future. This means legal and financial planning, so your family is not left confused and lost when they need this information later on.
You will likely feel daunted and overwhelmed when it comes to legal planning – so don’t be afraid to enlist the help of friends, family, and a lawyer to make sure that everything is taken care of and you are not having to carry this weight on your own.
Begin by organizing all important legal documents to your name, making necessary updates, and putting a plan in place for future finances for your healthcare, long-term care, and will. Give someone you trust power of attorney for when you are no longer to make legal decisions. A person with power of attorney will be able to make decisions for you and sign for you on important documents. Make sure that this person is fully aware of everything you want and need for the future, so they can make sure to make decisions based on your own plans and hopes.
Financial planning will include organizing documents and checking over your assets and debts, so you know exactly what you are responsible for down the road. Choose a family member, or family members, to help you with your financial plans when you are no longer able to. This person should have intimate knowledge about your finances and have your best interests in mind and in heart.
Find out the care options available to you and what they might cost. Whether you choose a family caregiver, hired home care, a nursing home, memory home, or assisted living facility will depend on what you can afford and what you desire. Check your insurance and benefits. Patients with early onset Alzheimer’s disease will be eligible for Medicaid. You might also have long-term care insurance, life insurance, or other health insurance that can help you pay for care costs. If you are still working, see if your employer has any disability or early retirement benefits that might help you.
It is recommended that people with memory issues stay in familiar surroundings, as strange places can quicken the progression of the disease. To learn more about choosing the right care, listen to our episodes on Alzheimer’s, dementia, and long-term care options.
Early onset dementia is an extremely difficult diagnosis for anyone to face. The more you can prepare for the road ahead, though, the more you can focus on spending precious time with your friends and family and doing what you love, instead of worrying about an uncertain future. Start planning today for the road ahead.
We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.
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Here are the resources used for this episode:
https://www.alz.org/help-support/i-have-alz/younger-onset
https://www.alz.org/alzheimers-dementia/what-is-alzheimers/younger-early-onset
https://www.alz.org/alzheimers-dementia/what-is-alzheimers/causes-and-risk-factors/genetics
https://www.alz.org/help-support/i-have-alz/live-well/taking-care-of-yourself
https://www.alz.org/help-support/resources/kids-teens/for_parents_teachers
https://www.alz.org/help-support/i-have-alz/plan-for-your-future/financial_planning
https://www.alz.org/help-support/i-have-alz/plan-for-your-future/financial_planning
https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers/art-20048356
https://www.hopkinsmedicine.org/health/conditions-and-diseases/alzheimers-disease/earlyonset-alzheimer-disease
https://memory.ucsf.edu/genetics/familial-alzheimer-disease
https://rarediseases.info.nih.gov/diseases/632/familial-alzheimer-disease
https://www.cbsnews.com/news/pat-summitts-death-what-to-know-about-early-onset-alzheimers/
