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How To Deal With Early Onset Alzheimer’s

Ways To Slow The Progression Of Early

Dealing with Early Onset Alzheimer’s

Although there is no currently known cure for Alzheimers, there is still much you can do if you or a loved one are diagnosed at an early age. According to Dr. Gad Marshall, Associate Medical Director of Clinical Trials at the Center for Alzheimer Research and Treatment at Harvard-affiliated Brigham and Womens Hospital, healthy habits may help ward off Alzheimers. There are several actions anyone can take to slow its progression while improving quality of life.

In addition to Dr. Marshalls sensible advice, there is a range of other things you can do to prevent cognitive decline personally, socially, and medically. An encouraging study by the UCLA Mary S. Easton Center for Alzheimers Disease Research and the Buck Institute for Research on Aging has suggested that memory loss in patients may be reversed, and improvements may be sustained. The study used a complex program involving changes in diet, brain stimulation, exercise, optimization of sleep, specific pharmaceuticals and vitamins, and additional efforts that affect brain chemistry. Try incorporating these findings into your life by trying these strategies:

A Wife Discusses Her Husbands Battle With Early

Judy Johanson says that after her husband, Steve, discovered he gave his boss a financial report at work, only to later realize he had already given him the exact same report, the couple decided to see whether he may have Alzheimers. Steves mother was already living with the disease and he had told Judy that getting the same diagnosis would be his worst nightmare. Shortly before he turned 59, he learned that he had early-onset Alzheimers. While the couple were saddened by the diagnosis, they decided to take action, becoming Alzheimers advocates and connecting with others who had received similar diagnoses.;

  • The couple began meeting with state and federal legislators to tell Steves story and advocate for other families dealing with an Alzheimers diagnosis
  • Steves Alzheimers progressed and landed him in the ER. He passed away shortly after. Judy describes their experience in the ER as horrific and today, advocates for better care for those living with dementia in hospital settings

Being Patient spoke to Judy, who is now a clinical research ambassador for Massachusetts Alzheimers Disease Research Center at Massachusetts General Hospital, about coping with her husbands early-onset diagnosis, the programs she is working on to ensure dementia patients receive better treatment in acute care settings and advice shed give to other families who learned their loved one has early-onset Alzheimers.;

Treatment For People With Early

If you are diagnosed with early-onset dementia, somebody at the Memory Clinic will talk to you about the treatment options that are available to you. There may be drug treatments or non-drug treatments, according to what is appropriate to your specific circumstances.

Drug treatments vary according to the type of dementia you have and non-drug treatments might include talking therapies to help you to come to terms with your diagnosis of dementia or cope with symptoms of anxiety or depression that you may experience. You might also want to look at couples counselling if the diagnosis affects your relationship significantly.

There currently is no cure for dementia. However, keeping physically healthy can potentially help to slow down the progression of the symptoms of younger-onset dementia. So keep active, eat healthily and sleep well. If you smoke, now is really the time to quit, and drinking should always be done in moderation.

Read Also: What Is The Difference Between Dementia And Senility

Ways To Help Dementia Parents

It is challenging for any person to admit an impairment of mental functions. In many patients, an insufficient realization of their condition is a manifesting symptom of the disease. Therefore, people often refuse to go to the doctor.

It might be challenging to convine a person with signs of dementia to visit a doctor. It can be especially heartbreaking to see the person you love change so much if it is your close relative or parent. However, when the diagnosis is evident, the crucial part will be accomplished. After that, the next step is therapy and proper care.

For a person with dementia, the safety issue is critical. Your parent may leave the house and forget to close the doors and windows or, conversely, shut the door without taking the key. The patient may not recognize faces well and could let a stranger into the house.

It is vital to ensure that your parent or loved one is in a safe environment. Here are some tips on how to prepare the house to help with dementia care:

Unfortunately, from a certain point on, these measures can no longer be sufficient: it will be necessary for someone to look after your loved one around the clock. But what if the person refuses care? Are there ways to convince a dementia patient to accept help? Read on to find out.

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Caroline Blanchette and Dr. Jacqui Hussey, trustees of ...

‘We know that more needs to be done to support these children and young people to cope both with their emotions following the diagnosis, but also to manage their adjustment to their parent’s journey through dementia which, contrary to the common perception that dementia is primarily about memory loss, can involve significant behavioural changes.’

While there is no right or wrong way to deal with such a life changing diagnosis, it’s important to make sure you’re doing it in a way that isn’t detrimental to you, or your relationship with the dementia sufferer. Here are some tips that could help you cope in the darkest moments.

Read Also: Does Alzheimer’s Run In Families

Excerpt From: What Happened To My Brain

Soon after diagnosed, the first formal writing I did about the experience was done for a subject at the University of South Australia. It was meant to be a travel piece, as if I was a travel writer, about visiting a new place. The only place I had inside my head was dementia, and with permission I wrote about that instead. It was subsequently published in the LINK Disability Magazine:

Dementia is an uninvited visitor to my world, an unwelcome early 50th birthday present, one where the old me seems to be rapidly moving away from a new me. I am being dragged along on this journey with no way to get back home as it races along like an express train without brakes. I read then I forget; I read, I take notes, and then I forget; I read, I highlight and take notes, and I still forget. That photographic memory I once had is gone, dead and fully buried. My high functioning mind has slipped away, sometimes showing itself like a ghost, teasing me into believing it will be okay, but just outside of my reach. Words now have no meaning and whole patches of my memory are disappearing.

Most days are now an effort not to just sit in a corner and cry, not to just give up or to give in to it. It requires a great amount of emotional effort to live a normal existence and is the most demeaning and frightening experience I have had, with a feeling of wretchedness I have not felt before.

Make Time For Reflection

At each new stage of dementia, you have to alter your expectations about what your loved one is capable of. By accepting each new reality and taking time to reflect on these changes, you can better cope with the emotional loss and find greater satisfaction in your caregiving role.

Keep a daily journal to record and reflect on your experiences. By writing down your thoughts, you can mourn losses, celebrate successes, and challenge negative thought patterns that impact your mood and outlook.

Count your blessings. It may sound counterintuitive in the midst of such challenges, but keeping a daily gratitude list can help chase away the blues. It can also help you focus on what your loved one is still capable of, rather than the abilities theyve lost.

Value what is possible. In the middle stages of dementia, your loved one still has many abilities. Structure activities to invite their participation on whatever level is possible. By valuing what your loved one is able to give, you can find pleasure and satisfaction on even the toughest days.

Improve your emotional awareness. Remaining engaged, focused, and calm in the midst of such tremendous responsibility can challenge even the most capable caregivers. By developing your emotional awareness skills, however, you can relieve stress, experience positive emotions, and bring new peace and clarity to your caretaking role.

Recommended Reading: Difference Between Dementia And Senility

How To Help A Person With Dementia Who Refuses To Accept Help

In the world, at least 50 million people live with dementia, and at least ten million new cases are diagnosed every year. Such disappointing statistics turn it into a global issue that needs attention.

A diagnosis of Alzheimers disease dramatically changes the life of both the person himself and his family members and friends, but information and support are available to everyone. No one should deal with Alzheimers disease or dementia alone.

We have collected the best tips on how to help a person with dementia. Continue reading to find out more!

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Interview with an Early Onset Alzheimer’s Patient

Jeff’s diagnosis at such a young age is unusual, but the Alzheimers Association estimates approximately 200,000 of the 5.5 million Americans currently living with Alzheimers develop it before the age of 65.

While a small number of cases of early onset disease are caused by a known genetic mutation, in the majority, we dont know why it starts at that age, said Dr. Oscar Lopez, a professor of neurology at the University of Pittsburgh.

After age 65, 10 percent of the population will have symptoms of Alzheimer’s; after 85, about half will develop the memory-robbing disease, Lopez said. There’s no cure yet and very little that can prevent it.

When Alzheimer’s strikes in mid-life, families face special problems: patients in their 50s and early 60s are still working, still paying off mortgages and often arent financially ready for retirement.

If the person is the primary income for the family, its going to have a huge impact on that family, said Monica Moreno, senior director of care and support at the Alzheimers Association. Besides, that person may have been the one carrying the health care plan. They may have children going off to college.”

Recommended Reading: How Fast Does Dementia Kill

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.

How To Handle Early

Although it’s thought of as an older person’s disease, more than 40,000 people under the age of 65 are living with the condition

Dementia, a progressive mental deterioration, is a well-known condition with symptoms such as memory loss, confusion and senility. While it mostly affects elderly people, around 5 per cent of dementia sufferers are under 65, mostly between the ages of 40 and 60.

This might sound like a tiny percentage, but it adds up to 42,325 people in the UK who are living with the disease in their early to middle ages, many of whom will have young families. Additionally, it’s thought that figure is probably higher because of the difficulties with diagnosing the condition.

Whilst young people experience similar symptoms to older people with dementia, the impact on their lives, and the lives of their loved ones, is far greater. Being told that somebody close to you has an incurable disease is never easy, and it’s made so much harder when the condition in question didn’t even cross your mind, as is so often the case with early-onset.

For the first time, research by the Alzheimer’s Society and Sheffield University is focusing entirely on the impact that a young dementia diagnosis can have on the patient’s loved ones specifically the children of those diagnosed. Pat Sikes, an Alzheimer’s society-funded researcher, said:

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Navigating Some Common Challenges Of Early Onset Dementia

As difficult as these changes can be for everyone involved, there are action points caregivers can take to help your loved one make these transitions:


  • Plan for the future. As the disease progresses, your family should form a plan that outlines when an employer should be told about the disease, and at what point your loved one should no longer work.
  • Make adjustments. Examine how your loved one could make adjustments so that he or she may continue to work as long as possible. This might include moving to a less stressful or difficult position, reducing work hours or working from home. These and other options will help to maintain the familys income and boost your loved ones self-esteem.
  • Explore other options. Consider early retirement, as well as ways to access all benefits available through your loved ones employer. The employer may have disability provisions in existing pensions and insurance plans.

Financial and legal matters

  • Plan ahead for financial needs. Meet with a financial counselor who can help you investigate insurance, investments and other financial options.
  • Get your documents in order. Organize all of your financial and legal documents, as well as other important information in one place, and make sure the necessary family members know where to find them.
  • Explore financial assistance options. Because dementia is a disabling illness, your loved one may qualify for disability assistance from some government programs.

Supporting Someone With Early

Caregiving for Early Onset Alzheimer

The first step in offering support to a relative with Early-Onset Alzheimers is to get an accurate diagnosis as early as possible. A proper diagnosis will help your loved one in numerous ways. For one thing,it can rule out other possible causes. Just as important, the diagnosis paves the way for the right sort of treatment.In addition, the diagnosis enables you and other family members to provide the right kind of compassion and support. Plus, the earlier the diagnosis is reached, the more time you will have to address not only health-related issues, but legal, financial and personal ones as well.

If your loved one is still in the workplace, you can help them cope with how they will handle their job. People dealing with early-onset Alzheimers may also have to cope with the judgments of their employer as well as their co-workers. They may need to switch jobs or face the prospect of an early retirement and may need to learn how to live with fewer financial resources.Youll want to become familiar with your relatives benefits, including any employer-sponsored assistance programs. Also look into the American with Disabilities Act along with other government options like COBRA or the Family and Medical Leave Act.You may also need to think beyond the needs of your loved one. For example, their spouse or partners life might transition to a caretaking role.

Recommended Reading: Does Meredith Grey Have Alzheimer’s

How To Motivate A Person To Do A Medical Check

It is vital to consult a doctor as soon as possible. Healthcare providers emphasize that early diagnosis can extend the years of a fulfilling life. Unfortunately, many people seek help too late, when the few medications that could slow the development of dementia and improve their health condition no longer work.

The common reasons for denying help among dementia patients are:

  • Lack of understanding of their condition
  • The feeling of being forced into something
  • Denial of health issues due to fear of diagnosis
  • Genuine disbelief in the severity of their case

Unfortunately, there is no universal guide on how to help elderly parents who dont want help. People are all different: for some, experiencing the fear of getting lost on a familiar street is enough, and someone is happy to check their health with their spouse. It is necessary to show understanding and, if possible, not to deceive your loved one, because the doctor at the reception will need consent for the examination. The sooner you manage to convince the patient to start treatment, the less likely the condition will get out of control.

If a parent with dementia refuses help, you must be extremely careful and gentle in how you suggest a visit to the doctor. Remember to choose the approach while taking into consideration the mental condition of the person and their personal traits. Here are some tips on how to convince a person to seek medical treatment:

Difficulties In Thinking Things Through And Planning

A person may get confused more easily and find it harder to plan, make complex decisions or solve problems.

Read Also: What Is The Difference Between Dementia And Senility

How To Maintain Social Relationships

Its important to involve close family and friends in your journey, for emotional and practical support, but also to minimize social isolation and allow you to remain active and engaged, even if the nature of your participation in activities has to change over time, says Marottoli.

For instance, Marottoli says an avid tennis player may no longer be able to keep score, but may still enjoy playing without the element of scoring, or switching to a different activity like walking, if eye-hand coordination deteriorates over time.

Where To Get Help

What a DEAL!! | Early Onset Dementia
  • Your local community health centre
  • National Dementia Helpline Dementia Australia ;Tel. 1800 100 500
  • Aged Care Assessment Services Tel. 1300 135 090
  • My Aged Care 1800 200 422
  • Cognitive Dementia and Memory Service clinics Tel. 1300 135 090
  • Carers Victoria Tel. 1800 242 636
  • Commonwealth Carelink and Respite Centres Australian Government Tel. 1800 052 222
  • Dementia Behaviour Management Advisory Service Tel. 1800 699 799 for 24-hour telephone advice for carers and care workers

Also Check: What Is The Difference Between Dementia And Senility


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