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What Is It Like To Live With Alzheimer’s

Living With: A Family Member With Dementia

Bill – What is it like to live with Alzheimer’s disease?

Dementia is a disease that can bring grief to a family if it isnt handled correctly. There are so many myths circulating about the illness, and many people do not understand that dementia is a manageable condition. In fact, many families living with a dementia patient can find some peace and a little stability. It just takes a clear understanding of what dementia is and how it can be managed.

First, everyone must realize the dementia is a symptom of another, more complex disease or disorder. It isnt contagious and you cant just come down with it like a cold.There is always something else that leads to the dementia.

These conditions include:

  • Narrowing blood vessels
  • Head injuries
  • Kidney disease
  • Liver disease

Some of these conditions only cause a temporary form of dementia that can be overcome with physical therapy, medication and time. Other forms of dementia are degenerative, so they get worse as the years go on. If your loved one suffers from the latter versions, it is best to make their time with you as enjoyable as possible. To do so, you may have to accommodate the dementia sufferer while the disease is still manageable.

Tips To Help Cope With Dementia

Coping with memory loss and problems with thinking speed can be distressing. But there are things that can help.

Try these tips:

  • have a regular routine
  • put a weekly timetable on the kitchen wall or fridge, and try to schedule activities for when you feel better
  • put your keys in an obvious place, such as a large bowl in the hall
  • keep a list of helpful numbers by the phone
  • put regular bills on direct debits so you don’t forget to pay them
  • use a pill organiser box to help you remember which medicines to take when

Read more about living well with dementia in Alzheimer’s Society’s dementia guide: living well after diagnosis.

Were Looking For Empathetic People Perhaps Who Have Done Volunteering And Have Some Understanding Of Older People Says Amanda

We want people who are happy to give their time it shouldnt feel like a job or be treated like a job.;

A great match is where both sides understand that there needs to be a balance.;

Amanda is keen to make more people aware of homeshare as an option.;

With future social care reform, homeshare should be more firmly on the agenda, she says.

Flo and Luciana.

Recommended Reading: Does Alzheimer’s Run In Families

Stage : Moderate Decline

During this period, the problems in thinking and reasoning that you noticed in stage 3 get more obvious, and new issues appear. Your friend or family member might:

  • Forget details about themselves
  • Have trouble putting the right date and amount on a check
  • Forget what month or season it is
  • Have trouble cooking meals or even ordering from a menu
  • Struggle to use the telephone
  • Not understand what is said to them
  • Struggle to do tasks with multiple steps like cleaning the house.

You can help with everyday chores and their safety. Make sure they aren’t driving anymore, and that no one tries to take advantage of them financially.

Dementia Symptoms: What Caregivers Should Know

Experience what it

As a caregiver, you may find certain dementia symptoms frustrating, baffling, and sometimes frightening. But what is the other side of the story? What is your mother doing — and feeling — when they put their wedding ring in the freezer or accuse you of stealing from them? Here are some clues to understanding dementia behavior.

  • Anxiety and Depression. It can be difficult for a caregiver to see a loved one â who may have been generally optimistic and easygoing when they were well — become anxious or depressed. Both are common dementia symptoms, and itâs hardly surprising. While their memories may fade, people with dementia are aware of whatâs happening to them, at least in the early stages. They know that they have an incurable, degenerative disease. They can feel the scope of their world becoming more and more confined as they lose freedoms like driving. They know that theyâre losing part of themselves too.âPrior to having this disease, I wasnât a person who needed to ask for help much,â says Becklenberg. âBut now I do, and itâs been a blow to my self-assurance and self-esteem. I canât participate fully in life like I used to, and itâs a huge loss.â
  • Wandering. Itâs not uncommon for a person with dementia to wander â to walk out of the house in a seemingly random direction. Caregivers can find this dementia symptom mysterious. Why would a loved one leave the safety of their home to wander through unfamiliar streets?

Recommended Reading: How To Move A Parent With Dementia To Assisted Living

What It Feels Like To Have Alzheimer’s

I’ve been publishing articles about Alzheimer’s disease for nearly two years. And I have to admit almost all have focused on the caregiver. Many have focused specifically on what it feels like to be a caregiver.

We can feel contentedness, pride and joy. We can feel elated whenever we make a meaningful connection with our loved one.

We can also feel sadness and loneliness. At times we are angry, depressed and frustrated; at other times we may be embarrassed by our loved one’s behavior and we can feel sorry for ourselves that we have to go through this experience. The list goes on and on.

But how does the person with dementia feel?

Although I’ve thought and written about how to deal with various behaviors that result from the feelings of people with dementia, I am embarrassed to admit I’ve spent very little time contemplating how these people really feel deep down inside.

I recently interviewed Teepa Snow, nationally renowned expert on Alzheimer’s caregiving. And I published an article here about her recommendations for planning activities for people with dementia.

At the end of the interview I asked her to recommend what she considered the best book for Alzheimer’s caregivers to read. She suggested we read The Best Friends Approach to Alzheimer’s Care by Virginia Bell and David Troxel.

So I bought the book and started reading. And that’s when I realized what I’ve been unwittingly ignoring. I’ve been ignoring what it must feel like to have dementia.

They continue:

How To Cope With Your Disease

After adjusting to the new diagnosis and preparing for the future, you can focus on living and coping with the disease. In this section,;youll find:

  • A checklist of steps to take to improve the Alzheimer patients home and personal safety.
  • News on recreation and quality of life and how physical and mental activities can enhance everyday life
  • A look at family and relationships and the challenges, emotions, and commitments family members will encounter
  • A reminder on employment and income to check with your current employer for eligibility under federal and state plans or benefits programs
  • A list of helpful resources including the organizations, people, and services that may help you build a support network

Also Check: Does Neil Diamond Have Alzheimer’s

How Dementia Causes Death

A person in the late stage of dementia is at risk for many medical complications, like a;urinary tract infection and pneumonia . They’re at an even higher risk of certain conditions because they’re unable to move.

Trouble swallowing, eating, and drinking leads to weight loss, dehydration, and malnutrition. This further increases their risk of infection.

In the end, most people with late-stage dementia die of a medical complication related to their underlying dementia.

For example, a person may die from an infection like aspiration pneumonia. This type of pneumonia usually happens because of swallowing problems.

A person may also die from a blood clot in the lung because they are bedbound and not mobile.

It’s important to know that late-stage dementia is a terminal illness.;This means that dementia itself can lead to death. Sometimes this is appropriately listed as the cause of death on a death certificate.

What Does Progression In Stages Mean

What’s it like living with Alzheimers Disease?

There are many different types of dementia and all of them are progressive. This means symptoms may be relatively mild at first but they get worse with time, usually over several years. These include problems with memory, thinking, problem-solving or language, and often changes in emotions, perception or behaviour.

As dementia progresses, a person will need more help and, at some point, will need a lot of support with daily living. However, dementia is different for;everyone, so it will vary how soon this happens;and the type of support needed.

It can be helpful to think of dementia progressing in three stages:

These are sometimes called mild, moderate and severe, because this describes how much the symptoms;affect a person.

These stages can be used to understand how dementia is likely to change over time, and to help people prepare for the future. The stages also act as a guide to when certain treatments, such as medicines for Alzheimers disease, are likely to work best.

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Watch Our Talk The Last Stage Of Alzheimers: What You Need To Know With Jasja Kotterman And Dr Liz Sampson Of University College London:

And then one day, the spell broke. She was hungry and thirsty, and drank and even ate and chewed, slowly, but with relish. And we gave her as much as we dared without causing her to choke. The doctor told us we would have many more months with her if she kept eating. It was a relief to hear this, and we had a few good daysso good that I planned to go back home, my sister made plans to head back to work, and my father planned to visit friends in France. We would keep in touch and be ready to come back as soon as things got worse again.

But worse came the following day. The doctor called saying my mother had developed a lung infection. She must have choked on something on one of the good days, some water, some food had entered her lungs and triggered a lung infection.

A Person With Dementia Doesnt Always Fit Into One Stage

Dementia affects each person in a unique way and changes different parts of the brain at different points in the disease progression.

Plus, different types of dementia tend to have different symptoms.

For example, someone with frontotemporal dementia may first show extreme behavior and personality changes. But someone with Alzheimers disease would first experience short-term memory loss and struggle with everyday tasks.

Researchers and doctors still dont know enough about how these diseases work to predict exactly what will happen.

Another common occurrence is for someone in the middle stages of dementia to suddenly have a clear moment, hour, or day and seem like theyre back to their pre-dementia abilities. They could be sharp for a little while and later, go back to having obvious cognitive impairment.

When this happens, some families may feel like their older adult is faking their symptoms or just isnt trying hard enough.

Its important to know that this isnt true, its truly the dementia thats causing their declining abilities as well as those strange moments of clarity theyre truly not doing it on purpose.

Also Check: What Is The Difference Between Dementia And Senility

Coming To Terms With A Diagnosis

Because I was so young, Alzheimer’s wasn’t one of the causes for my memory problems my doctor first considered. Could it be a head injury? Radiation exposure? He had all sorts of theories, none of which ultimately checked out. Even though Alzheimer’s runs in my familyâmy mother had itâit wasn’t considered at first.

Ultimately, it took eight years for me to get a diagnosis at age 57. After years of inconclusive theories and no answers, I was referred to a neuropsychologist who gave me a battery of cognitive function tests, which took several hours. They measured everything from my neuro-cognitive functioning to my processing speed. While I tested at 98 percent on verbal comprehension, scores for other areas were at the opposite end of the spectrum. It was a humbling experience. Even though the testing was difficult, it was crucial to my getting a diagnosis, which was “amnestic mild cognitive impairment due to Alzheimerâs disease.”

When I got that news, I just started to cry. My doctor told me that this was something that was only going to get worse with time, and he suggested I step back from my full-time job. I felt such a deep sadness because I truly loved my job and I loved the people in my church. Because the church gives the residing pastor housing, this meant I would also need to find a new place to live. It was a lot to think about.

Can Alzheimer’s Disease Be Prevented

Understanding What It

As the exact cause of Alzheimer’s disease is not clear, there’s no known way to prevent the condition.

But there are things you can do that may reduce your risk or delay the onset of dementia, such as:

These measures have other health benefits, such as lowering your risk of cardiovascular disease and improving your overall mental health.

Read more about preventing Alzheimer’s disease.

Read Also: Senility Vs Dementia

So What Should You Do

Looking at photos or articles can help spark memories. Geoff Fairhall grew up in Tasmania and the couple honeymooned on Lord Howe Island, so Anne Fairhall will often bring in mementos from those places when she visits the aged care home.

Geoff will remember things that go back 40 to 50 years ago, whereas if you asked him about something that happened five minutes ago, hes lost it, she says. Photos can remind people of something earlier in their life without you having to say, Remember when.

She will always bring chocolates, which her husband loves, and the couple will read together. He still has the ability to read in the moment, she says.

Dementia Australia encourages grandchildren to visit too. The organisation suggests playing games, watching a well-loved video, listening to music, helping with personal grooming and outings such as a stroll or short drive.

Finding The Message In Dementia Symptoms

When it comes to understanding dementia symptoms, Kallmyer says that there are limits to what a caregiver can do. âSometimes, the behavior of a person with dementia will have no meaning,â she says. âThe disease is just destroying their brain cells, and their actions have no rhyme or reason.â

But other times, Kallmyer says, seemingly irrational dementia symptoms will cloak a message that you can decode. âWe like to think of all behaviors as forms of communication from a person with dementia,â she tells WebMD. Taking the time to interpret and understand could not only get your loved one what they need, but also bring you closer together. While the relationship you once had with your loved one will fade away, you may forge a new and different but still meaningful connection.

John and Mary Ann Becklenberg canât know what the future holds for them, but for now theyâre focusing on what they have.

âI think that weâve actually felt closer as a result of this disease,â says John Becklenberg, who is the primary caregiver for his wife. âIâve had to slow down some and take more time with her.â

She also has some advice. âDespite the difficulties, Iâd urge caregivers and people with to try to find the humor in their lives,â she says. âJohn and I laugh about things, and it helps. People really need to know that.â

Also Check: How To Stop Alzheimer’s Patient From Picking Skin

An Alzheimers Diagnosis Now What

An;AD diagnosis can leave people feeling;lost and hopeless. However, many are resources available to help patients;cope with the disease;and to assist;them in staying active, in caring for themselves, and with making their own decisions for as long as possible.

It is important to remember that it is the disease itself that behind a;patients forgetfulness, confusion or odd behavior. The person does not change, and each person with Alzheimers;may not have the same problems or exhibit the same symptoms to the same degree.

Among;the challenges facing people with AD and their caregivers resources that may help are:

Facts About Alzheimer Disease

Dementia from the inside

Alzheimer disease is becoming more common as the general population gets older and lives longer.;Alzheimer disease;usually affects people older than 65. A small number of people have early-onset Alzheimer disease, which starts when they are in their 30s or 40s.

People live for an average of 8 years after their symptoms appear. But the disease can progress quickly in some people and slowly in others. Some people live as long as 20 years with the disease.

No one knows what causes Alzheimer disease. Genes, environment, lifestyle, and overall health may all play a role.

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Stages Of Alzheimer Disease

The stages of Alzheimer disease usually follow a progressive pattern. But each person moves through the disease stages in his or her own way. Knowing these stages helps healthcare providers and family members make decisions about how to care for someone who has Alzheimer;disease.

Preclinical stage.;Changes in the brain;begin years before a person shows any signs of the disease. This time period is called preclinical Alzheimer disease and it;can last for years. ;

Mild, early stage.;Symptoms at this stage include mild forgetfulness. This may seem like the mild forgetfulness that often comes with aging. But it may also include problems with concentration.;

A person may still live independently at this stage, but may;have problems:

  • Remembering a name

  • Staying organized

  • Managing money

The person may be aware of memory lapses and their friends, family or neighbors may also notice these difficulties.;

Moderate, middle stage.;This is typically the longest stage, usually lasting many years. ;At this stage, symptoms include:

  • Increasing trouble remembering events

  • Problems learning new things

  • Trouble with planning complicated events, like a dinner

  • Trouble remembering their own name, but not details about their own life, such as address and phone number

  • Problems with reading, writing, and working with numbers

As the disease progresses, the person may:

Physical changes may occur as well. Some people have sleep problems. ;Wandering away from home is often a concern.;


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