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How Bad Does Dementia Get

Scales For Rating Dementia

THIS doesn’t make you a bad dementia caregiver

Rather than simply using early stage,middle-stage, and late-stage dementia as descriptors, there are scales that provide a more comprehensive description. These scales help better understand the different stages of Alzheimers disease based on how well a person thinks and functions . These scales are the Global Deterioration Scale for Assessment of Primary Degenerative Dementia, the Functional Assessment Staging Test, and the Clinical Dementia Rating.

Did You Know?

Global Deterioration Scale / Reisberg Scale

The most commonly used scale is often referred to simply as GDS, or by its more formal name, the Reisberg Scale . The GDS divides into seven stages based on the amount of cognitive decline. This test is most relevant for people who have Alzheimers disease because some other types of dementia do not always include memory loss.

Someone in stages 1-3 does not typically exhibit enough symptoms for a dementia diagnosis. By the time a diagnosis has been made, a dementia patient is typically in stage 4 or beyond. Stage 4 is considered early dementia, stages 5 and 6 are considered middle dementia, and stage 7 is considered late dementia.

Global Deterioration Scale / Reisberg Scale
Diagnosis

Clinical Dementia Rating

Clinical Dementia Rating Scale
Stage
Average duration is 1 year to 2.5 years.

Financial And Legal Sources Of Support And Advice

We know how hard it is when you, or someone you care for, lives with a diagnosis of dementia. And if you or someone you love has a diagnosis or is suspected to have dementia, its natural to worry about how youll cope, now and in the future.

But youre not alone. In this booklet, youll find information on the legal terms you might encounter when you care for someone with dementia, advice on the financial benefits that you may be able to claim, and details of services and organisations that can support you.

There may not be a cure for dementia, but there is care and care can change lives.

Stage : Very Mild Cognitive Decline

Stage 2 can vary between typical age-related memory problems that most seniors face, such as forgetting specific dates or slower recall of a name or word. Or this stage could include some of the beginning signs of dementia that are often not obvious to doctors and loved ones. Some of the side effects that correspond with stage 2 include:

  • Forgetting everyday phrases or names
  • Forgetting the location of important objects

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How To Communicate With Someone Who Has Dementia

As dementia progresses, it affects peoples ability to express themselves so you may need to learn new ways to understand and communicate with the person you care for. Here are some tips:

  • If they don’t seem to be making sense, try to look for the meaning behind their words.
  • Speak slowly and clearly, using simple language and short sentences.
  • Avoid offering them complex choices keep things simple with questions that only need a yes or no answer.
  • Avoid testing their memory by asking them about what they’ve been doing. Try not to get into arguments about what they say even if you think theyre mistaken. Simply listening to what theyre saying rather than correcting them can help someone feel acknowledged.
  • Create a memory book to help them remember special times. This could be a collection of photos that represent happy events like weddings, holidays, or the birth of children. Memory books can help health and social care professionals understand the person. too.
  • If youre struggling with unusual or challenging behaviour, speak to the persons GP to get a referral to your community mental health team. The Alzheimer Societys factsheet Aggressive behaviour has more useful information including how to react, working out triggers, and dealing with your own feelings.

    It’s worth bearing in mind that distress and confusion may be caused by other health needs than dementia. Always discuss any concerns with the person’s GP so they can check for physical causes of symptoms.

    How Is Parkinsons Disease Dementia Diagnosed

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    No single test can diagnose Parkinsons disease dementia. Instead, doctors rely on a series or combination of tests and indicators.

    Your neurologist will likely diagnose you with Parkinsons and then track your progression. They may monitor you for signs of dementia. As you get older, your risk for Parkinsons dementia increases.

    Your doctor is more likely to conduct regular testing to monitor your cognitive functions, memory recall, and mental health.

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    How Can Healthcare Professionals Help At This Stage

    Healthcare professionals can explain these changes so you understand what is happening.

    Healthcare professionals can also take steps to reduce the persons pain or distress, often using medication.

    If the person cant swallow, then medication can be provided through patches on the skin, small injections or syringe pumps that provide a steady flow of medication through a small needle under the persons skin. Speak to a GP or another health professional about this.

    Talking Point

    Other Causes Of Sleeping Problems In Dementia

    Other causes of sleeping problems may include:

    • going to bed too early
    • sleeping too much during the day
    • overtiredness, causing tenseness and inability to fall asleep
    • not enough exercise, so the person does not feel tired
    • too much caffeine or alcohol
    • feeling hungry
    • agitation following an upsetting situation
    • disturbing dreams.

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    What You Can Do For Your Loved One

    As an individual with dementia declines, you can help them by providing a loving and supportive presence. Sit with them. Hold their hand. Play music they enjoy.

    One of the greatest gifts you can give your loved one is helping to get their affairs in order. Ensure that financial and healthcare powers of attorney are put in place, so you can make decisions when your loved one is no longer able. Look into funeral arrangements before you need them, so you dont need to make important decisions in a time of crisis.

    Talk to your loved ones physician about the possibility of palliative care support in the home and hospice care when your loved one is ready.

    Living In A Different Reality

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    Individuals with advanced dementia may appear to be so far removed from reality that they seem like they are living in their own world. For example, they may be completely silent and appear to be unresponsive to our attempts to communicate.

    Others may still talk a lot, but in a way that is not easily understandable to us. For example they may produce noises that sound like words, repeat words over and over or speak in sentences that dont seem to make any sense.

    In turn, those with advanced dementia are also likely to experience extreme difficulty understanding what others are saying to them. As speech may no longer be usable or understandable for people at the later stages of the illness we may find that our attempts to talk to those we care for are unsuccessful.

    For more on this issue, see the features on A different reality and Repetition in the section on Difficult situations.

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    What We Know About Dementia

    The National Institute on Aging says that dementia affects approximately 3.4 million Americans, or 13.9 percent, of the U.S. population ages 71 and older and is usually caused by brain damage associated with Alzheimers disease, vascular dementia or Parkinsons disease. And in Canada, the number of people living with dementia is expected to rise 66% by the time we reach 2031.

    It is important to differentiate the various types of dementia for about 70% of patients, a diagnosis of dementia will be accompanied by a diagnosis of Alzheimers disease. Although these terms are often used interchangeably, Alzheimers and dementia are not one in the same. Dementia is a loss of brain function that refers to a group of illnesses.

    Although dementia may be a symptom of Alzheimers, it may have other underlying causes, such as Picks disease, hypothyroidism or head trauma. While Alzheimers is the leading cause of dementia, vascular dementia, which is often caused by stroke, accounts for about 17% of all dementia cases.

    While people will experience dementia differently, most people with dementia share some of the same symptoms that may come and go.

    Be Aware Of Their Eating And Drinking

    The person may have lost their appetite or have difficulties swallowing safely. In the last days, the person may stop eating or drinking. This can be very distressing to watch, but it is normal for people approaching the end of life.

    You should offer the person food and drink for as long as it is safe and they show an interest. Its important to keep the persons mouth comfortable provide sips of fluids and keep lips moist and clean.

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    Duration Of Stages: How Long Do The Stage Of Alzheimers / Dementia Last

    No two people with dementia experience the disease exactly the same way, and the rate of progression will vary by person and type of dementia. In addition, it is not uncommon for individuals to have mixed dementia, meaning they have more than one type. That said, there is a natural course of the disease, and over time the capabilities of all persons with dementia will worsen. Eventually, the ability to function goes away. Keep in mind that changes in the brain from dementia begin years before diagnosis, when there are no outward symptoms. This makes it difficult to know how much time a person has left, though there are ways to come close to knowing life expectancy.

    Life Expectancy by Dementia Type
    Dementia Type
    2 to 8 years following pronounced symptoms

    Mild DementiaIn this early stage of dementia, an individual can function rather independently, and often is still able to drive and maintain a social life. Symptoms may be attributed to the normal process of aging. There might be slight lapses in memory, such as misplacing eyeglasses or having difficulty finding the right word. Other difficulties may include issues with planning, organizing, concentrating on tasks, or accomplishing tasks at work. This early stage of dementia, on average, lasts between 2 and 4 years.

    Physical Health And Pain

    About Dementia

    There are many physical problems that commonly accompany advanced dementia and these can have an extremely negative impact on quality of life for the person with dementia and family carers. Skin problems, undetected infections , chewing, swallowing and breathing difficulties, marked weight loss and constipation are some of the most likely and distressing physical conditions that develop in the late stages of the illness .

    These conditions can be the cause for a great deal of bodily pain, but because people with advanced dementia find it so much harder to communicate that they are in pain, it often goes unrecognised. Given this, it is so important that we get to know the person and pay attention to their non-verbal behaviour: their facial expressions, bodily movements and sounds. If the person is acting in a way that is different to their typical behaviour, we should first investigate the persons physical comfort before making other assumptions.

    For more on this issue, see the feature on Pain in advanced dementia in the section on End of life).

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    Provide Support For Family And Friends

    Keep any family or friends informed about what is happening in a gentle, sensitive and supportive way. This will help reassure them that the person is getting the care they need. You could consider signposting them to appropriate services, such as an Admiral Nurse or local Alzheimers Society. It can also help to give them an opportunity to talk about what is happening.

    Early Symptoms Of Dementia

    Overview

    Dementia is a collection of symptoms that can occur due to a variety of possible diseases. Dementia symptoms include impairments in thought, communication, and memory.

    If you or your loved one is experiencing memory problems, dont immediately conclude that its dementia. A person needs to have at least two types of impairment that significantly interfere with everyday life to receive a dementia diagnosis.

    In addition to difficulty remembering, the person may also experience impairments in:

    • language
    • reasoning

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    What Are Specific Care Needs At Each Stage

    An individual may not require care assistance after the initial diagnosis of dementia, but that will change as the disease progresses and symptoms become worse. There are about 16 million unpaid caregivers of people with dementia in the United States. While many caregivers are providing daily help for family members, they also hire someone to help. There are many options of care assistance, such as in-home care, adult day care, and nursing home care. There is also financial assistance available.

    Early Stage DementiaAs mentioned above, in the early stage of dementia a person can function rather independently and requires little care assistance. Simple reminders of appointments and names of people may be needed. Caregivers can also assist with coping strategies to help loved ones remain as independent as possible, such as writing out a daily to-do list and a schedule for taking medications. Safety should always be considered, and if any tasks cannot be performed safely alone, supervision and assistance should be provided. During this period of dementia, its a good idea for caregivers and loved ones to discuss the future. For example, a long-term care plan should be made and financial and legal matters put in place.

    What Are The Main Types Of Dementia

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    Alzheimers disease is the most common cause of dementia, accounting for around 2 out of every 3 of cases in older people. Vascular dementia is another common form, while dementia with Lewy bodies and frontotemporal dementia are less common.

    It is possible to have more than one type of dementia at the same time. Alzheimers is sometimes seen with vascular dementia or dementia with Lewy bodies. You might hear this called mixed dementia.

    The symptoms of dementia vary depending on the disease, or diseases, causing it. You can read more about the symptoms associated with different types of dementia on the Alzheimers Society website .

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    Which Skills Are Lost

    This dependency on others is commonly interpreted as signifying that not only do people with advanced dementia have nothing to contribute to the social world, but that they have actually lost the desire to communicate and participate in social interactions. This stage of dementia has even been referred to as a social death .

    These are serious claims and can lead to a damaging marginalisation of people with advanced dementia. Would we make similar claims about people who have difficulty in communicating due to learning disability, stroke or deafblindness? Would we make these claims about healthy babies who are yet to talk, walk or communicate in a way that we easily understand? The answer to these questions is undoubtedly no, but sadly this alienation of people with advanced dementia is commonplace in our society.

    Medical Interventions In Late

    If someone is in the later stages of dementia and becomes seriously ill, there may be discussion about whether to actively treat their illness. Ways of intervening may include resuscitation after a heart attack, antibiotic treatment for pneumonia, or giving food or liquids by mouth.

    Giving or withholding treatment is a serious decision to make for someone else and is not an easy one to make. You need to consider:

    Sometimes the decision can only be made by a guardian appointed by a tribunal or court. Each state and territory has different regulations but medical staff or Dementia Australia can advise you about appropriate contacts.

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    Check Their Advance Care Plan

    You should find out if the person has an advance care plan. This document may record their preferences about the care theyd like to receive, including what they want to happen, what they dont want to happen and who they want to speak on their behalf. It may include an advance statement or an advance decision. We have information on planning ahead for patients and their families, which you might find useful.

    Difficulty Completing Normal Tasks

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    A subtle shift in the ability to complete normal tasks may indicate that someone has early dementia. This usually starts with difficulty doing more complex tasks like balancing a checkbook or playing games that have a lot of rules.

    Along with the struggle to complete familiar tasks, they may struggle to learn how to do new things or follow new routines.

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    Why Dementia Symptoms Fluctuate

    The common perception that symptoms come and go is an important area worthy of additional study. From what we know now, here are five considerations when thinking about why your loved one might experience increasing and decreasing signs of dementia.

  • Your loved one is in the early stages of dementia. The onset of dementia is confusing and frightening for patients and family alike. In early-stage dementia, memory problems and confusion come and go and may be accompanied by periods of completely normal behavior. As one writer puts it, One day the person may be calm, affectionate and functioning well, the next, forgetful, agitated, vague and withdrawn.
  • Co-existing medical conditions. Its very common for those who suffer from dementia to have other diseases that may worsen symptoms. For example, when an Alzheimers patient is also depressed, it may be that a deepening depression is to blame for emotional problems. Sometimes, treating the other condition will appear to improve Alzheimers. This is why its important for loved ones as well as the medical support team to not make any assumptions as to why the patient seems better or worse.
  • Maybe its not Alzheimers. There usually arent major changes in cognitive function from day to day for Alzheimers patients. On the other hand, its common with another form of dementia called Lewy body dementia. This under-recognized and under-diagnosed dementia can result in an apparent improvement in symptoms.
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