What Happens In The Last Stages Of Dementia

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While most cases of COVID-19 are mild, causing only fever and cough, a very small percentage of cases become severe and may progress particularly in the elderly and people with underlying medical conditions. Because this is the primary population that Devoted Guardians serves, we understand your concerns and want to share with you how our organization is responding to the threat of COVID-19.

We are following updates and procedures from the Centers for Disease Control State Department of Health, local and county authorities, the Home Care Association of America and other agencies and resources. Our response and plans may adjust according to the recommendations from these organizations.

Understanding Lewy Body Dementia

Lewy body dementia consists of two different conditions: dementia with Lewy bodies and Parkinson’s disease dementia. The two share many of the same symptoms and may often be considered to be the same.

However, one significant factor in how Lewy body dementia progresses is related to which disease is actually present. In Parkinson’s disease dementia, the physical challenges are usually evident first, while in dementia with Lewy bodies, cognitive changes may appear earlier than, about the same time, or shortly after, the physical changes develop.

Support Family And Loved Ones

It is vital that the persons family and loved ones are aware that the person may be in the last few days or hours of life. Share information in a gentle and sensitive manner, drawing on those staff who have the strongest relationships with the person and their family. Giving family members space to explore their feelings and concerns is a critical part of good end-of-life care.

Often, family and loved ones want to be present when the person dies. They should know that changes can happen suddenly and the person may die, for example, when they have just popped out of the room to use the bathroom.

Sometimes, family members may not want to be present at the death. Family and relatives should never feel that they should stay, but always give them the opportunity to stay and to be involved in care as they wish.

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Common Early Symptoms Of Dementia

Different types of dementia can affect people differently, and everyone will experience symptoms in their own way.

However, there are some common early symptoms that may appear some time before a diagnosis of dementia. These include:

• memory loss
• difficulty concentrating
• finding it hard to carry out familiar daily tasks, such as getting confused over the correct change when shopping
• struggling to follow a conversation or find the right word
• being confused about time and place
• mood changes

These symptoms are often mild and may get worse only very gradually. It’s often termed “mild cognitive impairment” as the symptoms are not severe enough to be diagnosed as dementia.

You might not notice these symptoms if you have them, and family and friends may not notice or take them seriously for some time. In some people, these symptoms will remain the same and not worsen. But some people with MCI will go on to develop dementia.

Dementia is not a natural part of ageing. This is why it’s important to talk to a GP sooner rather than later if you’re worried about memory problems or other symptoms.

Offer Touch And Human Contact

Sit with the person, hold their hand and talk to them as if they can still hear you. Hearing can be the last sense that a person loses at death. This shows that you care and shows respect. If family are at their loved ones bedside, stay with the person when the relative has a break, and again hold the persons hand.

The care team would need to plan how you can provide this kind of one-to-one support.

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The Seven Stages Of Dementia

One of the most difficult things to hear about dementia is that, in most cases, dementia is irreversible and incurable. However, with an early diagnosis and proper care, the progression of some forms of dementia can be managed and slowed down. The cognitive decline that accompanies dementia conditions does not happen all at once – the progression of dementia can be divided into seven distinct, identifiable stages.

Learning about the stages of dementia can help with identifying signs and symptoms early on, as well as assisting sufferers and caretakers in knowing what to expect in further stages. The earlier dementia is diagnosed, the sooner treatment can start.

Stage : Moderate Dementia

Patients in stage 5 need some assistance in order to carry out their daily lives. The main sign for stage 5 dementia is the inability to remember major details such as the name of a close family member or a home address. Patients may become disoriented about the time and place, have trouble making decisions, and forget basic information about themselves, such as a telephone number or address.

While moderate dementia can interfere with basic functioning, patients at this stage do not need assistance with basic functions such as using the bathroom or eating. Patients also still have the ability to remember their own names and generally the names of spouses and children.

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Stage : Moderately Severe Decline

During the fifth stage of Alzheimers, people begin to need help with many day-to-day activities. People in stage five of the disease may experience:

• Difficulty dressing appropriately
• Inability to recall simple details about themselves such as their own phone number
• Significant confusion

On the other hand, people in stage five maintain functionality. They typically can still bathe and toilet independently. They also usually still know their family members and some detail about their personal histories, especially their childhood and youth.

What Is The Life Expectancy Of Someone With Dementia

The average life expectancy figures for the most common types of dementia are as follows: Alzheimers disease around eight to 10 years. Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimers live for longer, sometimes for 15 or even 20 years.

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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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How Can You Recognise When A Person Is Dying

Recognising when a person with advanced dementia is dying may not always be easy as they may have many general signs and symptoms of dying already. For example, some common signs and symptoms seen in people dying are:

• profound weakness
• needing assistance with all care
• disorientation to time or place
• agitated or restless
• difficulty concentrating.

People with advanced dementia may show some of these signs and symptoms for months or even years making it hard to tell if the person is approaching death. However, if these symptoms become much worse over a period of two to three weeks, or even days or hours, it is important that a doctor or nurse sees the person. If the doctor or nurse thinks that the person is deteriorating or nearing the end of life and it would be in the persons best interest to be cared for in their own home, a care home or hospice then discuss this information with the persons family. They should also be given an explanation of why the deterioration is happening and the care that is going to be given. When death is expected it is usally not of benefit for the purpose with dementia to be sent to hospital: the death is more likely to be traumatic, unsupported and complicated by other medical events .

When the dying process is established, the person may experience further changes:

• losing consciousness
• no longer able to swallow
• terminal restlessness
• changes to breathing pattern and circulation .

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What Happens In The Later Stages Of Dementia

• Progressive loss of memoryThis can be a particularly disturbing time for family and carers as the person with dementia may fail to recognise close family members.
• Increased loss of physical abilitiesMost people with dementia gradually lose their ability to walk, wash, dress and feed themselves. Other illnesses such as stroke or arthritis may also affect them. Eventually the person will be confined to a bed or a chair.
• Increased difficulty communicatingA person with dementia will have increasing difficulty in understanding what is said or what is going on around them. They may gradually lose their speech, or repeat a few words or cry out from time to time. But continuing to communicate with them is very important. Remember, although many abilities are lost as dementia progresses, some – such as the sense of touch and ability to respond to emotions – remain.
• Problems eatingIt is common for people in the later stages of dementia to lose a considerable amount of weight. People may forget how to eat or drink, or may not recognise the food they are given. Some people become unable to swallow properly. Providing nutrition supplements may need to be considered. If a person has swallowing difficulties, or is not consuming food or drink over a significant period of time and their health is affected, nutrition supplements may be considered for consumption other than by mouth.

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The blisters didnt heal, and then an old bruise on her leg opened up and started bleeding and crusting over. It was due to poor blood circulation, made worse by the fact that she was having trouble eating and her protein intake was too low, exacerbating the fluid build-up in the blisters. And then she stopped being able to swallow her medicine no antibiotics to help heal the wounds on her heels and legs, no paracetamol to ease the discomfort, not even a relaxant to help her sleep at night.

I didnt know it then, but we finally encountered the real killer with Alzheimersforgetting how to swallow.

In late March I found her still sitting at the dining table two hours after the meal, staring at her bowl of fruit. The nurses said she had become a slow eater. I realized at that point that the suddenness of my mothers spiral had even surprised the staff. They didnt realize the blisters were from bedsores, thinking her shoes were too tight they didnt help her to eat, thinking she was taking her time. It was the disease, slowly shriveling the part of her brain that takes care of the physical processes and basic functions.

One day she just stopped eating and drinking completely. Not only does Alzheimers make you forget how to swallow, but it also attacks the part of the brain that sends thirst and hunger pangs. And thats when I understood what would kill hershe would slowly wither away, dry up, unable and unwilling to eat or drink.

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Recognising When Someone Is Reaching The End Of Their Life

Read about some of the signs that a person with dementia is nearing their death, and how you can support yourself as a carer, friend or relative.

It is important to know when a person with dementia is nearing the end of their life because it can help in giving them the right care. However it can be difficult to know when this time is.

This uncertainty can have a big impact on how the persons family feel, and may also affect how they feel themselves.

There are symptoms in the later stages of dementia that can suggest the person is reaching the final stage of their illness. These include:

• speech limited to single words or phrases that may not make sense,
• needing help with most everyday activities,
• eating less and having difficulties swallowing,
• bowel and bladder incontinence,
• being unable to walk or stand, problems sitting up and controlling the head, and becoming bed-bound.

It is likely that a person with dementia is nearing the end of their life if they have these symptoms, along with other problems such as frailty, infections that keep coming back, and pressure ulcers .

Getting Prepared For A Death

Care staff need to know the persons wishes for their death: where they would prefer to be when they die, who should be present, how pain might be treated, and so on. A persons spiritual and cultural needs are important throughout their life, but may take on a particular significance at the end of their life. We can only support a person nearing death properly if we know this information and have recorded it accurately so they have the best possible, and personalised, end-of-life care

Ensuring that a person is as physically comfortable as possible when they are dying also takes preparation. Is a hospital-style bed available, for example, if it is needed? Is a suitable mattress to hand? How can dignity best be maintained if all personal care is provided at a persons bedside? Does the persons room need to be altered in any way, for example fitting new lighting?

Relatives also need to be prepared. For family, having a good relationship with care staff may be a critical part of the lead-in to this dying phase. You also need to know family members wishes at this time. For example, do they want to be present for the death if possible?

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What Are The Main Types Of Dementia

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 .

Can Dementia Get Worse Suddenly

Dementia is a progressive condition, meaning that it gets worse over time. The speed of deterioration differs between individuals. Age, general health and the underlying disease causing brain damage will all affect the pattern of progression. However, for some people the decline can be sudden and rapid.

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How Can I Support Someone With Dementia Towards The End Of Life

Knowing the person will make it easier to provide person-centred care that is focused on what they need and want. It can help to know about their likes, dislikes and their wishes for how they want to be cared for. If the person isnt able to tell you about themselves, speak to their family, friends or other people who know them well.

Its a good idea to find out if the person has a copy of This is me , a document that records information about themselves. If you cant speak to the person, ask those close to them if they have a copy. They may have these details recorded in their care plan.

There are many ways to support someone with dementia at the end of life.

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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Barriers For Good Palliative Care For People With Dementia

Despite increasing knowledge of optimal care and the recommendation for early integration of palliative care in the course of disease, accompanied by disease modifying treatment , a number of reasons for barriers of good palliative care for people with dementia were identified .

Diagnosing dementia in the early phases can be challenging and lengthy, leading to delays early access to palliative care . Dementia is often not acknowledged as terminal and life limiting disease and consequently end of life is not taken into consideration or adequately addressed . Another barrier is the difficulty in predicting the duration of the disease or its anticipated course in contrast to cancer. Although experts have determined the average length of the different stages and length of the disease, accurate individual predictions remain challenging. Notably, people with dementia have limited access to hospice and palliative care .

Regardless of all efforts there is still no consensus on palliative care in dementia . The applicability and appropriateness of palliative care for people with dementia was also one of the controversies in the development of the EAPC White Paper on optimal palliative care for dementia . There is a great need for robust study results on complex interventions at the end of life . The optimal timing to integrate palliative care or adapt care goals or simultaneous goals to modify disease and to provide comfort is still in discussion .