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What Do Alzheimer’s Patients Think About

How Common Is Dementia

Experience 12 Minutes In Alzheimer’s Dementia

Research shows there are more than 850,000 people in the UK who have dementia. One in 14 people over the age of 65 have dementia, and the condition affects 1 in 6 people over 80.

The number of people with dementia is increasing because people are living longer. It is estimated that by 2025, the number of people with dementia in the UK will be more than 1 million.

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Dementia Patients And Their Families Struggle With Uncertainty

When will things get better?

This is a question that dementia patients and their family members ask often. Everyone wants answers, but there are few certainties to be had when dementia is involved. Experts do their best to explain all the nuances of the disease, but do their answers coincide with what a patient actually goes through? Can they truly tell you what its like to be a person living with this horrible condition?

Here is my take on this disease from a patients perspective: Things will never get better. The difficult behaviors and frustration will sometimes subside. You will see glimpses of lucidity and your loved ones old personality from time to time. But, better simply is not possible with this progressive condition.

How Might Dementia Affect People Towards The End Of Life

Dementia is progressive, which means it gets worse over time. In the last year of life, its likely to have a big impact on the persons abilities including memory, communication and everyday activities. The speed at which someone will get worse will depend on the type of dementia they have and who they are as an individual.

The symptoms of later stage dementia include the following:

A person with later stage dementia often deteriorates slowly over many months. They gradually become more frail, and will need more help with everyday activities such as eating, dressing, washing and using the toilet. People may experience weight loss, as swallowing and chewing become more difficult.

A person with later-stage dementia may also have symptoms that suggest they are close to death, but continue to live with these symptoms for many months. This can make it difficult for the person and their family to plan for the end of life. It also makes it difficult for those supporting them professionally.

For more information on supporting someone with later stage dementia see Alzheimers Society factsheet, The later stages of dementia .

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Are There Any Treatments

There are treatments that can help with the symptoms of some forms of dementia for a period of time, but there are currently no treatments that slow, halt or reverse the changes in the brain caused by the diseases. There are currently no treatments specifically for vascular dementia or frontotemporal dementia.

In the case of vascular dementia, a doctor may prescribe medication to treat underlying cardiovascular risk factors like high blood pressure or diabetes. Physiotherapy, speech therapy or occupational therapy may be offered to help with speech or movement problems. Non-drug treatments such as cognitive therapies may be available and can help some people with dementia to manage their symptoms.

Alzheimer’s Society has more information on treatments for dementia.

Watch For Signs The Person Is In Pain

Understanding the Stages of Dementia

Always remember that the person with Alzheimer’s may not be able to tell you when he or she is in pain. Watch the person’s face to see if it looks like he or she is in pain or feeling ill. Also, notice sudden changes in behavior such as increased yelling or striking out. If you are unsure what to do, call the doctor for help.

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Caring For Someone With Dementia Towards The End Of Life

Please be aware – this information is for healthcare professionals. We also have information for the public.

You can use our My Learning form to reflect on how this page has helped with your continuing professional development.

People with dementia may experience problems with thinking, memory, behaviour and mobility. It can be difficult to recognise when someone with dementia is nearing the end of their life. You can support the person by communicating with them and helping them with any symptoms they have. If possible, its a good idea to plan the persons care in advance to help understand what they want from their care.

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Outrageous Things People With Dementia Say And How To Respond

Dementia can cause people to say and do some pretty odd things. Family caregivers may be caught off-guard at first, but as they learn about their loved ones condition, it should become easier to adapt to these new quirks. However, people who are not providing care for someone with dementia typically arent familiar with the unusual symptoms that Alzheimers disease can cause. When elders living with cognitive decline need to interact with outsiders as they venture out to shop, attend doctors appointments, socialize and live their lives, embarrassing and sometimes inappropriate scenarios may ensue.

Handling dementia-related behavior changes while out in public is a harrowing experience at times. I can recall one instance when I was sitting with my neighbor, Joe, at the local clinic, waiting for some medical tests he required. Joe saw a man pulling an oxygen tank behind him and excitedly yelled, Look! Hes got a golf cart! While an outsider would have been confused by his exclamation, it made sense enough to me. Joe had loved playing golf as a younger man, his sight was poor and his word-finding abilities had declined over the years. He saw and announced what he knew: a golf cart. The man walking by was embarrassed. I simply smiled at him and redirected Joe, asking him to tell me his best golfing stories.

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Why It’s Important To Get A Diagnosis

Although there is no cure for dementia at the moment, an early diagnosis means its progress can be slowed down in some cases, so the person may be able to maintain their mental function for longer.

A diagnosis helps people with dementia get the right treatment and support. It can also help them, and the people close to them, to prepare for the future.

Read more about how dementia is diagnosed.

Stage : Very Severe Decline

Living with dementia

Many basic abilities in a person with Alzheimer’s, such as eating, walking, and sitting up, fade during this period. You can stay involved by feeding your loved one with soft, easy-to-swallow food, helping them use a spoon, and making sure they drink. This is important, as many people at this stage can no longer tell when they’re thirsty.

In this stage, people with Alzheimer’s disease need a lot of help from caregivers. Many families find that, as much as they may want to, they can no longer take care of their loved one at home. If thatâs you, look into facilities such as nursing homes that provide professional care day and night.

When someone nears the end of their life, hospice may be a good option. That doesn’t necessarily mean moving them to another location. Hospice care can happen anywhere. Itâs a team approach that focuses on comfort, pain management and other medical needs, emotional concerns, and spiritual support for the person and their family.

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Stage : Normal Outward Behavior

Alzheimerâs disease usually starts silently, with brain changes that begin years before anyone notices a problem. When your loved one is in this early phase, they won’t have any symptoms that you can spot. Only a PET scan, an imaging test that shows how the brain is working, can reveal whether they have Alzheimer’s.

As they move into the next six stages, your friend or relative with Alzheimer’s will see more and more changes in their thinking and reasoning.

Don’t Use Terms Of Endearment Instead Of Names

Terms of endearment should generally be reserved for close family members and friends.

If you’re a health professional and you walk around calling others “sweetheart,””honey,” and “dear,” you’re often missing an opportunity. Use the person’s name. It’s one of the more precious things to people, and for people with Alzheimer’s, it conveys that they are important enough to be called specifically by their name.

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Alzheimer’s Patients Can Still Feel Emotion Long After Memories Have Vanished

University of Iowa Health Care
A new study further supports an inescapable message: caregivers have a profound influence — good or bad — on the emotional state of individuals with Alzheimer’s disease. Patients may not remember a recent visit by a loved one or having been neglected by staff at a nursing home, but those actions can have a lasting impact on how they feel.

A new University of Iowa study further supports an inescapable message: caregivers have a profound influence — good or bad — on the emotional state of individuals with Alzheimer’s disease. Patients may not remember a recent visit by a loved one or having been neglected by staff at a nursing home, but those actions can have a lasting impact on how they feel.

The findings of this study are published in the September 2014 issue of the journal Cognitive and Behavioral Neurology.

UI researchers showed individuals with Alzheimer’s disease clips of sad and happy movies. The patients experienced sustained states of sadness and happiness despite not being able to remember the movies.

“This confirms that the emotional life of an Alzheimer’s patient is alive and well,” says lead author Edmarie Guzmán-Vélez, a doctoral student in clinical psychology, a Dean’s Graduate Research Fellow, and a National Science Foundation Graduate Research Fellow.

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Materials provided by University of Iowa Health Care. Original written by John Riehl. Note: Content may be edited for style and length.

Diseases Such As Alzheimers Disease Cause Nerve Cells To Die Damaging The Structure And Chemistry Of The Brain

The Dos and Donts of Dementia Care

There are lots of other causes and no two types of dementia are the same. In different types of dementia there is damage to different parts of the brain.

Other types of dementia include:

Alzheimers disease tends to start slowly and progress gradually. Vascular dementia after a stroke often progresses in a stepped way. This means that symptoms are stable for a while and then suddenly get worse.

Everyone experiences dementia in their own way. Lots of things can affect this, including the persons attitude to their diagnosis and their physical health. Other factors include the relationships they have with friends and family, the treatment and support they get, and their surroundings.

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Our free booklet lists essential information that everyone should know about dementia.

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Can Alzheimer’s Disease Be Prevented

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.

What Do People In Advanced Stages Really See

My uncle did not have Alzheimer’s that we knew of, though after several strokes, he did suffer from some type of dementia, likely vascular. He would sit on the porch of the nursing home where he spent his last years, often calling out his deceased wife’s name. His plaintive calls were painful to hear. “Marion! Marion!” It was heartbreaking. The image that struck me was that he seemed to be physically reaching toward something.

I sat with him during his final hours. The nearer to death he got, the more he reached out. Repeatedly, he’d grab outward to what appeared to be thin air. Did he see or hear something I didn’t?

I often wonder what those in the advanced stages who mutely stare into space are seeing. Something? Nothing? Some would say there is not enough left in their shrunken brain to have thoughts that their motions are merely basic instincts such as a response to pain. Perhaps, but personally, I would not be comfortable making that assumption.

For that reason, I advise people to watch what they say around these folks who have lived a full life, but cannot now express their feelings. I advise them to watch their body language, as their agitation or anger may transfer to the person for whom they are caring. I advise them to remember that this person, regardless of their inability to communicate, is still a person, nothing less.

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Planning For The Future

  • Talk to the person with dementia to make sure that they have a current up-to-date will that reflects their wishes.
  • Encourage the person with dementia to set up a Lasting Power of Attorney so that a responsible person can make decisions on their behalf when they are no longer able to.
  • Talk to the person with dementia about making an advance decision to refuse certain types of medical treatment in certain situations. It will only be used when the person with dementia has lost the capacity to make or communicate the decision in the future.
  • If the person youre caring for has already lost the ability to make or communicate decisions but doesnt have an LPA, you can apply to the Court of Protection who can make decisions on behalf of that person or appoint someone else to do so.

If the person you care for drives, the law requires them to tell DVLA about their diagnosis. A diagnosis of dementia doesn’t automatically mean someone has to stop driving straight away what matters is that they can drive safely.

How To Handle Dementia And Racism

Alzheimers Explained – What You NEED to Know

While some of the inappropriate things that come out of dementia patients mouths tend to be off the wall or even comical, other comments are deeply hurtful to those around them. These remarks are the product of interacting with the world as usual but without any social filters. A senior with cognitive impairment may comment on a persons attractiveness, weight, clothing, accent or even race. The first few items on this list can come across as downright rude, but offensive remarks about ones race or ethnicity cross a very serious line and must be addressed swiftly and sensibly by caregivers.

This is often an issue with elder care providers like in-home care agencies, adult day care centers and senior living communities where the comprehensive staff is comprised of people from diverse backgrounds and interacts with clients and residents on a regular basis. A dementia patient may comment on a persons race or ethnicity or even use racial slurs. While we dementia caregivers quickly learn to laugh off an odd statement or redirect repeated questions, these kind of remarks cannot be swept under the rug.

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What Are The Symptoms

Each person is unique and will experience dementia in their own way. The different types of dementia tend to affect people differently, especially in the early stages.

A person with dementia will often have cognitive symptoms . They will often have problems with some of the following:

  • Day-to-day memory difficulty recalling events that happened recently.
  • Repetition repeating the same question or conversation frequently in a short space of time.
  • Concentrating, planning or organising difficulties making decisions, solving problems or carrying out a sequence of tasks .
  • Language difficulties following a conversation or finding the right word for something.
  • Visuospatial skills – problems judging distances and seeing objects in three dimensions.
  • Orientation – losing track of the day or date, or becoming confused about where they are.

Some people have other symptoms including movement problems, hallucinations or behaviour changes.

Don’t Assume They’re Confused All The Time

Even though someone has Alzheimer’s or another form of dementia, they may still have frequent times of clarity.

For instance, someone with early-stage Alzheimer’s may tell you that a friend had called and said they would be stopping by at a certain time. You might doubt if they really had the information correct, but sure enough, later that day, you will see that their friend was there to visit.

Remember not to discount everything said by a person with dementia.

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Kind Calming Ways To Respond To I Want To Go Home

These suggestions will put you on the right track, but its a good idea to get creative and come up with responses that are tailored for your older adults history, personality, and preferences.

1. Reassure and comfort to validate their needsSometimes saying I want to go home is how your older adult tells you theyre tense, anxious, scared, or in need of extra comfort.

Approach your older adult with a calm, soothing, and relaxed manner. If you remain calm, it often helps them calm down too.

If they like hugs, this is a good time for one. Others may prefer gentle touching or stroking on their arm or shoulder or simply having you sit with them.

Another way of giving extra comfort and reassurance is to give them a soothing blanket, therapy doll, or stuffed animal.

2. Avoid reasoning and explanationsTrying to use reason and logic isnt recommended when someone has a brain disease. It will only make them more insistent, agitated, and upset.

Dont try to explain that theyre in their own home, assisted living is now their home, or they moved in with you 3 years ago.

They wont be able to process that information and will feel like youre not listening, you dont care, or that youre stopping them from doing something thats important to them.

3. Validate, redirect, and distractBeing able to redirect and distract is an effective dementia care technique. Its a skill that improves with practice, so dont feel discouraged if the first few attempts dont work perfectly.


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