What Happens In The Early Stage Of Dementia
Dementia affects everyone differently and early symptoms are often relatively mild and not always easy to notice.
Many people at the early stage of dementia stay largely independent and only need a bit of assistance with daily living. It is important to focus on what the person can do and not to take over and do things for them. Instead, try doing things with them, for example helping the person develop a routine, reminder lists and prompts, and use technology.
For more information for people living with dementia, see the ‘Keeping active and involved‘ page.
The early stage of dementia is when many people choose to make plans for the future, while they still have the ability to do so. This includes making a Lasting power of attorney , and advance decisions and advance statements to ensure their wishes and preferences are made clear.
Getting Connected To Services After Diagnosis
â said, âOh, this is great, we have a diagnosis, what do we do now? Is there a pill, orâ¦?â And this is when the doctor said: âNo, thereâs no pill, thereâs nothing that we can do at all,â and youâll have to basically âgo home, get your affairs in order because you will die from this.ââ â from Ontario. Mary Beth lives with young onset frontotemporal dementia.
Even after an accurate diagnosis is made, a younger person with dementia is still likely to face obstacles. These obstacles may start with being unable to get more information about dementia or find referral to dementia-focused programs and services in their community.
We know that many people living with dementia go on to live very fulfilling lives for quite some time. Unfortunately, due to lack of knowledge and training, some healthcare providers still seem to offer little hope or support for life after diagnosis.
However, even if their doctor is helpful and can suggest practical next steps, there is another significant obstacle for the person diagnosed with young onset dementia to overcome.
Finding A Huge Gap In Services And Supports For Younger People
âI unfortunately ran into that brick wall where I was ineligible for just about everything because of my age.â â Faye.
Most social programs and services are designed for older people with dementia. In comparison, the number of programs designed for people living with young onset dementia is sparse.
People living with young onset dementia may not find the programs intended for older adults interesting or beneficial in respect to their needs. They may not feel comfortable in a seniorsâ program. And even if they were interested and comfortable in joining a program, they might be ineligible because of their age!
We have a gap in our knowledge about young onset dementia. As a result, there simply aren’t enough information, support, financial aid and services adapted for younger people living with dementia.
However, this is changing. The Young Onset Gap Analysis Project, initiated through the National Information Support and Education Committee and the Alzheimer Society of Canada , explored the gaps of available learning and support resources for people living with young onset dementia, and sought advice and feedback from those with lived experience.
The information from this report is being used to develop new resources dedicated to education and support for people living with young onset dementia, families, caregivers and healthcare providers.
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Problems With Vision And Spatial Awareness
Alzheimers disease can sometimes cause vision problems, making it difficult for people to judge distances between objects. The person may find it hard to distinguish contrast and colors or judge speed or distance.
These vision problems combined can affect the persons ability to drive.
Normal aging also affects eyesight, so it is essential to have regular checkups with an eye doctor.
The Effects Of Being Diagnosed At A Young Age
The personal and social consequences of young onset dementia can be much different than those experienced by people diagnosed with dementia later in life.
People living with young onset dementia are often still working at the time of diagnosis, are physically fit, and may have dependent children or parents at home. They may have major financial commitments, like a mortgage or student loan, that they are looking to pay off.
The diagnosis of dementia, and the changes it will bring, can only increase the stress of handling these responsibilities. With dementia now in the mix, it’s natural for a younger person just diagnosed with dementia to think, “What’s next!?” and worry about how they can meet handling their responsibilities.
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Be Open With Family And Friends
- Talk to your spouse and/or other close family members about your thoughts, fears, and wishes. Your family can help you plan for the future, including decisions about health care and legal and financial issues.
- Talk openly with children about your disease. Understand that they may be feeling concerned, confused, upset, or afraid. If appropriate, involve your children in discussions and decisions that affect the whole family.
- Your friends or neighbors might not know how to react to your diagnosis. They may feel like they dont know what to say or how to help, and may be waiting for you to make the first move. Invite friends to spend time with you. And dont be afraid to ask for help when you need it.
Difficulty Completing Familiar Tasks
Some people may experience a greater problem with concentration. Routine day-to-day tasks requiring critical thought may take longer as the disease progresses.
The ability to drive safely may also be called into question. If you or a loved one gets lost while driving a commonly traveled route, this may be a symptom of AD.
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Frequently Misplacing Items And Not Being Able To Retrace Steps
Most people will lose items at some time, but they are usually able to locate them again by searching in logical locations and retracing their steps.
However, someone with Alzheimers disease may forget where they placed an item, especially if they put it in an unusual place. They may also be unable to retrace their steps to find the missing item. This can be distressing and may cause the person to believe that someone is stealing from them.
Planning For Life With Early
Diagnosis of the condition allows you to prepare yourself and your family in the following ways:
- Family. You will want to discuss your diagnosis with your family and make plans for your care as the disease progresses. You may also want to educate your family and friends on your diagnosis, as many people are unaware that Alzheimers can affect younger people.
- Finances. You will need to carefully consider and plan for the financial implications of your diagnosis and perhaps get help from a financial expert with experience in the field. You may wish to research benefits you can claim, such as The Americans with Disabilities Act, Family and Medical Leave Act, and COBRA.
- Legal. Legal issues to be considered include financial and medical power of attorney, a living will, and end-life wills. As your illness develops, you may be deemed unfit to complete these legal documents, so take action as soon as you can.
- Work. If you work, your employer may be able to adapt your workload or schedule to help you cope better.
- Counseling. You and your family may benefit from psychological counseling, following your diagnosis. This will help you come to terms with your diagnosis and plan for your future.
The Alzheimers Association offers great advice on all of these issues.
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Changes In Mood Or Emotion
The person may be more anxious, frightened or sad, and so at risk of depression. It is also common to become more irritable perhaps in frustration at lost abilities or easily upset. A person can often be more withdrawn, lack self-confidence and lose interest in hobbies or people.
Changes in behaviour are not common in early-stage dementia, other than in FTD. A person with behavioural variant FTD may lose their inhibitions and behave in socially inappropriate ways. They may also act impulsively and lose empathy for others.
Significant physical changes at this stage tend to be limited to DLB, where problems with movement are similar to Parkinsons disease. If someone with vascular or mixed dementia has a stroke, this can lead to weak limbs on one side.
Need help finding dementia information?
Everybody forgets things from time to time. But if you or other people are noticing that memory problems are getting worse, or affecting everyday life, it could be a sign of dementia.
Risk Factors To Consider
Although AD isnt an expected part of advancing age, youre at increased risk as you get older. More than 32 percent of people over age 85 have Alzheimers.
You may also have an increased risk of developing AD if a parent, sibling, or child has the disease. If more than one family member has AD, your risk increases.
The exact cause of early onset AD hasnt been fully determined. Many researchers believe that this disease develops as the result of multiple factors rather than one specific cause.
Researchers have discovered rare genes that may directly cause or contribute to AD. These genes may be carried from one generation to the next within a family. Carrying this gene can result in adults younger than age 65 developing symptoms much earlier than expected.
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Dementia With Lewy Bodies
Dementia with Lewy bodies is caused by the build-up of tiny protein deposits in the brain. DLB is less common in younger people with dementia than in older people. Lewy bodies also cause Parkinsons disease and about one-third of people with Parkinsons eventually develop dementia.Symptoms of dementia with Lewy bodies can include hallucinations and varying levels of alertness. People can also develop the features of Parkinsons disease .
What is dementia with Lewy bodies?
Find out more about dementia with Lewy bodies, diagnosis and how to treat it.
Who Is Affected By Early
Those affected by early/young onset dementia are most likely to be diagnosed with rarer forms of dementia. They are more likely to have a genetically inherited form of dementia.
Studies have shown that people with a learning disability are at greater risk of developing early-onset dementia.
Common types of dementia in younger people
- Alzheimers disease accounts for around a third of young people with dementia.
- Vascular dementia around 20% of young people with dementia have vascular dementia.
- Frontotemporal dementia around 12% of young people.
- Korsakoffs syndrome around 10%
- Dementia with Lewy bodies around 10%
Impact of younger people and their families
While young people experience similar symptoms to those who are older, the impact on theirs and their familys lives is much greater. They are more likely to still be working when they are diagnosed and have significant financial commitments such as a mortgage, dependent children, and often the care of their own parents.
Their lives tend to be more active, and they have plans, ambitions to fulfil for themselves and their children. They may not have planned for their retirement, let alone what happens if they no longer have the capacity.
Signs and symptoms of early-onset dementia
The signs and symptoms of early-onset dementia can vary from one person to another and will be different depending on the type of dementia the person has. For some, the change can be physical as well as mental.
What to do next?
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Do Genes Cause Diseases
Genetic mutations can cause diseases. If a person inherits a genetic mutation that causes a certain disease, then he or she will usually get the disease. Sickle cell anemia, cystic fibrosis, and some cases of early-onset Alzheimer’s disease are examples of inherited genetic disorders.
Other changes or differences in genes, called genetic variants, may increase or decrease a person’s risk of developing a particular disease. When a genetic variant increases disease risk but does not directly cause a disease, it is called a genetic risk factor.
Identifying genetic variants may help researchers find the most effective ways to treat or prevent diseases such as Alzheimer’s in an individual. This approach, called precision medicine, takes into account individual variability in genes, environment, and lifestyle for each person.
The expression of geneswhen they are switched on or offcan be affected, positively and negatively, by environmental and lifestyle factors, such as exercise, diet, chemicals, or smoking. The field of epigenetics is studying how such factors can alter a cell’s DNA in ways that affect gene activity.
What Is Early Onset Familial Alzheimer Disease
Definition: What Is eFAD?
Early onset familial Alzheimer disease is hereditary and marked by Alzheimer disease symptoms that appear at an unusually early age. Symptoms can start in a person’s thirties, forties, and fifties . Generally, if you are diagnosed with eFAD, then one of your parents will also have had it if he or she lived long enough, and your siblings and your children may have a 50-50 chance of having inherited it. Very rarely, eFAD can make a first-time appearance in a family through a new genetic mutation.
Genetics researchers studied eFAD families to discover the three known genes that cause familial AD: amyloid precursor protein , presenilin-1 , and presenilin-2 . Of these, PS1 mutations account for most eFAD, while APP and PS2 are more rare. Having a pathogenic mutation in one of these three genes virtually guarantees that one will develop early onset Alzheimer disease. Tests can determine which gene is at fauly . There are also cases of eFAD that cannot be linked to one of these three genes. There may be additional genes waiting to be discovered, if only researchers could connect with more eFAD families.
Prognosis: Is eFAD Different from LOAD?
How Common Is Early Onset Familial Alzheimer Disease?
For practical and research purposes, doctors and scientists need defined populations for study and the numbers change based on the definitions. The definition would seem to rest on two criteria:
|Early onset sporadic||Late-onset sporadic|
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How Do I Treat Early
Keep your body in good shape, too. Make sure you eat healthy food and get regular exercise.
Clinical Manifestations Of Eoad
In general, the clinical manifestation of AD is characterized by a predominant impairment of anterograde episodic memory. This symptom is typically accompanied by a multitude of cognitive impairments in domains, such as visuospatial, language, and executive function . The combination of the aforementioned characteristics contributes to a global cognitive decline, eventually leading to a total dependent state, and death . Although this typical clinical presentation of memory-predominant phenotypes overlaps between LOAD and EOAD cases, a subset of EOAD cases show an atypical presentation of preserved episodic memory function but focal cortical symptoms relating to language, visuospatial, or executive function . In 25% of EOAD cases, there is a distinct phenotype of non-memory symptoms, in particular apraxia, visual dysfunction, fluent or non-fluent aphasia, executive dysfunction, or dyscalculia, that is seen as the disease progresses . In addition, individuals with EOAD often present with a more aggressive disease progression and a shorter relative survival time , with the rate of progression driven at least in part by the nature of the underlying causative variant . EOAD cases have a greater pathological burden compared to LOAD .
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Symptoms Of Early Onset Alzheimers Disease
Most people experience momentary memory lapses. Misplacing keys, blanking on someones name, or forgetting a reason for wandering into a room are a few examples. These arent definitive markers of early onset Alzheimers, but you may want to watch out for these signs and symptoms if you have a genetic risk.
The symptoms of early onset Alzheimers are the same as other forms of Alzheimers. Signs and symptoms to watch out for include:
- difficulty following a recipe
- frequently misplacing things without being able to retrace steps to find it
- inability to balance a checking account
- getting lost en route to a familiar place
- losing track of the day, date, time, or year
- mood and personality changes
- trouble with depth perception or sudden vision problems
- withdrawing from work and other social situations
If youre younger than 65 and experience these kinds of changes, talk with your doctor.
Problems Writing Or Speaking
The person may also have difficulty with words and communication. They may find it hard to follow or contribute to a conversation, or they may repeat themselves. They may also have difficulty writing down their thoughts.
The person may stop in the middle of a conversation, unable to figure out what to say next. They may also struggle to find the right word or label things incorrectly.
It is not uncommon for people to occasionally struggle to find the right word. Typically, they eventually remember it and do not experience the problem frequently.
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Memory Loss That Impedes Daily Activities
The most noticeable symptom of Alzheimers disease is often memory loss. A person may start forgetting messages or recent events in a way that is unusual for them. They may repeat questions, having forgotten either the answer or the fact that they already asked.
It is not uncommon for people to forget things as they get older, but with early onset Alzheimers disease, this happens earlier in life, occurs more often, and seems out of character.