Ways To Manage Changes In Behaviour
The reasons for these types of behaviour may not always be clear. They may be due to, or a combination of, difficulties caused by dementia , mental and physical health, habits, personality, interactions with others and the environment.
Try and understand what may be causing the persons behaviour, and think about whether they have any unmet needs.
- Ensure that any glasses or hearing aids are clean and functioning properly. Arrange regular sight and hearing checks.
- Check whether the persons medication is appropriate or whether they might be ill or in pain . A visit to the GP to rule out any physical problems is a good idea.
- Check that they are not being disturbed by too many people, too much activity, loud noises, sudden movements or an uncomfortable environment .
- Consider whether they may be bored or in need of stimulation. Engage the person in meaningful activities. Gentle activities such as a hand massage, listening to their favourite music or stroking a soft piece of fabric may help.
- Make sure the person is comfortable for example not in pain, too hot, cold, hungry, thirsty, or needing the toilet.
Stage : Normal Outward Behavior No Dementiaquality Of Life: No Impact
You wont notice any changes with your loved one.
How You Can Help:
If you and your loved one are concerned about dementia, start to plan now. Use our tools to help your loved one document his or her values and priorities about the type of care wanted during the various stages of dementia. You can also watch for new signs that you may not have seen before.
Physical Health And Pain
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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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.
Stage : Mild Cognitive Decline
Stage 3 is where dementia or Alzheimers disease symptoms can become more noticeable to friends and family. This stage will not have a major impact on your loved ones everyday life, but signs can include:
- Trouble with complex tasks and problem-solving
- Memory loss and forgetfulness
- Asking the same question repeatedly
- Diminished work performance
- Denial
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Stage : Moderately Severe Decline
Your loved one might start to lose track of where they are and what time it is. They might have trouble remembering their address, phone number, or where they went to school. They could get confused about what kind of clothes to wear for the day or season.
You can help by laying out their clothing in the morning. It can help them dress by themselves and keep a sense of independence.
If they repeat the same question, answer with an even, reassuring voice. They might be asking the question less to get an answer and more to just know you’re there.
Even if your loved one can’t remember facts and details, they might still be able to tell a story. Invite them to use their imagination at those times.
Supporting A Person In The Later Stages Of Dementia
The later stages of dementia can be a challenging time both for the person experiencing dementia and for those close to them. Find out what you can expect and where you can get help and support.
The later stages of dementia
When a person is in the later stages of dementia they are likely to be much more frail. This is sometimes also known as advanced or severe dementia. The later stages can be hard to define and everyone will go through them in their own way.
However, a person in the later stages is likely to experience severe memory loss, problems with communication and daily activities, and greater changes in behaviour and physical problems than in the earlier stages. They will probably rely on others for much of their care.
Some people may not want to know what to expect in the later stages and it is important to respect this. However, knowing what to expect can help the person and those supporting them to plan ahead for the treatment and care they may want.
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Support For Dementia Caregivers At The End Of Life
Caring for people with Alzheimers or other dementias at home can be demanding and stressful for the family caregiver. Depression is a problem for some family caregivers, as is fatigue, because many feel they are always on call. Family caregivers may have to cut back on work hours or leave work altogether because of their caregiving responsibilities.
Many family members taking care of a person with advanced dementia at home feel relief when death happensfor themselves and for the person who died. It is important to realize such feelings are normal. Hospicewhether used at home or in a facility gives family caregivers needed support near the end of life, as well as help with their grief, both before and after their family member dies.
Middle Stage Or Moderate Dementia
As they progress through the seven stages of dementia, elderly people require more intense care and supervision. Someone with middle stage dementia often needs some caregiver assistance with regular day-to-day activities, such as dressing, eating, or bathing.
Dementia stage 5: moderately severe cognitive decline
This stage marks the onset of what many professionals refer to as mid-stage in the seven stages of dementia.
At this point, a person may no longer be able to carry out normal activities of daily living , such as dressing or bathing, without some caregiver assistance. They know major facts about themselves such as their name and their childrens names but they may not remember grandchildrens names, their longtime address, or where they went to high school.
Stage 5 dementia symptoms
- Further reduced mental acuity and problem-solving ability
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What Are The Seven Stages Of Dementia
The most common types of dementia, including Alzheimers, are progressive, meaning cognitive decline worsens over time. Dementia is categorized as mild, moderate, or severe as well as early stage, middle stage, and late stage dementia.
Health care providers often use a more comprehensive tool to assess the seven stages of dementia in elderly patients. Its called the Global Deterioration Scale , or the Reisberg Scale, and was developed by Dr. Barry Reisberg, a geriatric psychiatrist and professor, in 1982.
The GDS enables caregivers and health professionals to determine how quickly dementia progresses in elderly patients, and which symptoms to expect during each of the seven stages of dementia.
Planning For Care In The Later Stages
If the person with dementia has made their wishes known regarding care in their later stages, you can support them and help them to meet these plans. These may consist of various things.
In England and Wales people can write an advance decision. This is sometimes written as ADRT – advance decision to refuse treatment – and used to be known as a living will or advance directive. They can also write an advance statement to express their wishes and preferences about future care . They may also wish to appoint a Lasting power of attorney for health and welfare.
In Northern Ireland people can also make an advance directive and advance statement. They may appoint power of attorney under the Northern Ireland system, Enduring power of attorney and controllership.
Legal issues in the later stages of dementia
Find out more about advance decisions and lasting power of attorney for people with dementia.
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Caregiving In The Late Stages
According to the Alzheimers Association, the later stages will be the most difficult, as your loved one is now very frail and relies on you for most of their daily care. At this late stage, encouraging your loved one to eat and sleep will grow increasingly difficult. During this time, they may lose the ability to walk steadily, so an occupational therapist may help them stay mobile without falling. Gather a team of experts to help you, like a speech therapist to help with communication and a nutritionist to recommend the best food and alternative food options, like blended meals, smoothies, and finger foods, that boost the immunity and are packed with nutrition. Incontinence, severe memory loss and disorientation, immune system problems, repetitive movements, and strange or unusual behavior must all be managed during this stage as well.
Watching a loved one live with dementia is never easy. With the proper tools, you can help them navigate their symptoms to live an enriching life. Staying on top of the latest research with Google alerts and attending seminars from expert speakers and medical professionals will keep you up-to-date on new treatments and care techniques. Most importantly, find a supportive community. There are many support groups for caregivers where you can share your successes, frustrations, fears, and joys with other caregivers. Remember, you are not alone!
Using The Gds To Measure Dementia Progression
As the disease progresses, different signs and symptoms will become increasingly obvious. While there are several scales to measure the progression of dementia, the most common scale is the Global Deterioration Scale for Assessment of Primary Degenerative Dementia . The scale is also known as the Reisberg Scale. According to the GDS, there are seven different stages of Alzheimers disease correlating with four distinct categories: no Alzheimers, mild Alzheimers , moderate Alzheimers , and severe Alzheimers .
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Changes Of Behaviour In The Later Stages
People in the later stages of dementia may behave out of character. These behaviours can be difficult to understand and often have different causes.
The later stages of dementia
They may be a sign that a persons need is not being met , or that they are confused or distressed. Often behaviour is a means of communication and can be a result of the person feeling a certain way .
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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Communication In Advanced Dementia
People with advanced dementia have differing abilities, and an urge to communicate is always retained. Communication is more than just speech, and non-verbal communication is particularly important for people with advanced dementia. Knowing the life history of a person with advanced dementia is vital in order to get the communication going. We must focus on whatever skills or behaviours a person still has, and use these to try to make a connection and communicate with the person.
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.
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Living In A Different Reality
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.
Stages : Very Severe Decline
Stage seven is the final stage of Alzheimers. Because the disease is a terminal illness, people in stage seven are nearing death. In stage seven of the disease, people lose the ability to communicate or respond to their environment. While they may still be able to utter words and phrases, they have no insight into their condition and need assistance with all activities of daily living. In the final stages of Alzheimers, people may lose their ability to swallow.
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Alma And Silvias Story
Alma had been forgetful for years, but even after her family knew that Alzheimers disease was the cause of her forgetfulness, they never talked about what the future would bring. As time passed and the disease eroded Almas memory and ability to think and speak, she became less and less able to share her concerns and wishes with those close to her.
This made it hard for her daughter Silvia to know what Alma needed or wanted. When the doctors asked about feeding tubes or antibiotics to treat pneumonia, Silvia didnt know how to best reflect her mothers wishes. Her decisions had to be based on what she knew about her moms values, rather than on what Alma actually said she wanted.
Quality of life is an important issue when making healthcare decisions for people with dementia. For example, medicines are available that may delay or keep symptoms from becoming worse for a little while. Medicines also may help control some behavioral symptoms in people with mild-to-moderate Alzheimers disease.
However, some caregivers might not want drugs prescribed for people in the later stages of Alzheimers. They may believe that the persons quality of life is already so poor that the medicine is unlikely to make a difference. If the drug has serious side effects, they may be even more likely to decide against it.
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.
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Which Skills Are Retained
Both research findings and the experiences of professional and family caregivers provide a great deal of evidence to suggest that people with advanced dementia do retain the desire to communicate with others . In fact, this urge is perhaps the most vital element of our humanity and may therefore be the last to leave us. However, the ways in which people with advanced dementia attempt to communicate and display their desire to interact may go unrecognised or misinterpreted.
Once again, we must consider that each person is an individual with different abilities and a unique life history. As such, it is important that we do our best to find out about how the person communicates, the sorts of things that they still like to do, and the persons life history.