Support Care Staff And Colleagues
It is important to remember that staff caring for a person in the last hours and days of their life may find this to be emotionally challenging or distressing. This may be especially so for those who have worked with the person for some time and who have built a meaningful relationship with that person and their family. Those newer to care work, or who have little previous experience of care at the end of life, may find this a worrying or stressful time. It is important that care staff are given support by managers and colleagues, are able to ask for advice and reassurance where needed, and have the space to acknowledge their feelings.
See End of life care and carers’ needs for more information.
Approaching End Of Life
Participants related that individuals with DLB were often ready for death.
She had been saying, for a while, that she just wanted to go to heaven.
She knew it was coming, the end, and then she started shutting down. And she decided not to want to eat anymore.
Several participants were frustrated when acceptance of death was followed by a delay.
When it got to that point, there was underlying fear that it wouldnt be it yet, and it was a fear because she was really ready to die finally.
Many family members could tell when EOL was approaching. Experience of the final days to weeks of life, though, varied substantially. Several participants described a difficult prolonged deathwatch, while others described a peaceful process . There was widespread agreement that timing of death was difficult to predict and often longer than was anticipated by family members.
Treatments For Vascular Dementia
There’s currently no cure for vascular dementia and there’s no way to reverse any loss of brain cells that happened before the condition was diagnosed.
But treatment can sometimes help slow down vascular dementia.
Treatment aims to tackle the underlying cause, which may reduce the speed at which brain cells are lost.
This will often involve:
- taking medicines, such as those used to treat high blood pressure, lower cholesterol or prevent blood clots
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What Are The Complications Of Dementia
A common question people have when they hear that a loved one has dementia is, How can you die from dementia?
Though dementia itself may not be the final cause of death, the complications of dementia, like infections, cardiovascular diseases, malnutrition, and falls can be fatal.
Dementia often progresses through a variety of different signs and symptoms:
- Memory Difficulties and Loss: Memory issues are often the first signs of dementia, and they can be an ongoing problem with most patients.
- Disorientation: People with Alzheimers can become confused in familiar situations or surroundings, such as at home.
- Language Problems: This may be an issue with frontotemporal dementia, one of the less common forms.
- Problems Completing Complex Tasks: Problems following a set of instructions, such as brush your teeth, may signify that dementia is affecting higher-level brain functions.
- Wandering: People with dementia may wander and become lost or disoriented, even in familiar places.
- Physical Difficulties: Dementia may cause physical changes, such as weight loss or dehydration, affecting overall health. In late stage dementia, eating and walking can become difficult.
- Delusions and Hallucinations: People with delusions may become anxious or agitated. This problem can be worse at night.
Through all these stages, its important to have the right support in your corner. Dementia patients often end up requiring24-hour in-home care to support them through the decline.
Medical Complications Resulting In Death Of Dementia Patients
Although dementia itself is a fatal disease, it is common for dementia patients to die from other medical complications. These major medical events are typically a result of the underlying dementia symptoms. For instance, a person may die from an infection like aspiration pneumonia, which occurs as a result of swallowing difficulties, or a person may die from a blood clot in the lung as a result of being immobile and bedridden.
The simple fact that the late stages of dementia leave the patient extremely susceptible to infections and other diseases, can often make it difficult to determine what may cause their death. If they do survive any medical complications during the end-stage of dementia, the disease itself is fatal and will lead to death as well. Those with loved ones or family members who are in the late stages of dementia should focus on making their loved one as comfortable as possible and provide palliative care rather than aggressive medical treatment.
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Common Complications Of Alzheimers Disease That Cause Death
A lack of self-awareness and self-care, prolonged confinement to a bed, feeding failure, inability to receive proper nutrition and dehydration are all factors in the development of other life-threatening health conditions in dementia patients. While brain damage associated with AD is the driving force behind the patients cognitive decline and incapacitation, these secondary illnesses and conditions are ultimately responsible for causing the patients physical decline and death.
Complications of Alzheimers disease are commonly cited as such on death certificates. Because of this, deaths with a primary cause of AD and related dementias are seriously underreported. This is especially true since dementia can go unnoticed as it progresses slowly over the course of many years. Furthermore, a significant number of patients never receive an official neurological diagnosis while alive or after they have died.
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.
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Recognise And Meet Spiritual And Cultural Needs
Care providers also need to be attentive to meeting a persons spiritual or cultural needs at the end of life. For one person, this may involve making sure they have contact with a religious leader in the last days or hours of their life, while another may want their favourite composers music to be played quietly but continuously throughout the period. This information should be recorded clearly, and should not come as a surprise to care staff who will know the person their life history, preferences and nature well. You should also discuss these aspects with the persons family or friends.
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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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.
Life Expectancy And Dementia With Lewy Bodies
Dementia with Lewy bodies accounts for around 7% of cases of dementia. Lewy bodies are tiny protein deposits that affect thought, memory and movement and are linked to both dementia and Parkinsons disease.
Hallucinations, sleep disturbance, and movement problems can be an early feature in dementia with Lewy bodies, so that diagnosis may be made at an earlier stage. Some research suggests that survival can be significantly shorter with this challenging condition, however, the Alzheimer’s Society says:
Implications For Policy And Practice
This study raises interesting issues in relation to EOLC for people with dementia which have implications for care provision and health and social care policy.Maintaining care at home until the end of life may often not be possible due to the long duration of the behavioural and dependency care needs associated with advanced dementia. While transfer to a care home setting may have adverse impact on longevity, adequate provision of appropriate long-term care facilities with staff skilled in the care of people with dementia could help optimise quality of EOLC and reduce undesired deaths in hospital. Such decisions might need to take into account not only health economic considerations but also patient and carer satisfaction with care and place of death. As people with dementia move towards the end of their lives, arguably, the focus may have to shift from hospitalisation, invasive medical treatments and harmful psychotropic drugs to the provision of a place of care, comfort and dignity.
Despite evidence that moving into a care home setting is associated with reduced longevity and the difficulties of a hospital admission for a patient with dementia, it appears to be the case with the relatively limited data that the most common place of final days of life and place of death for a person with dementia is either care home or hospital.
identify patient preferences
define goals of care and
implement a management plan consistent with those goals.
When Should I Ask For Support
Supporting people with dementia at the end of their life requires a team approach. Often, there will be many people involved in the persons care at the end of their life. Good communication and information sharing helps to ensure the person receives the care they need.
If youre unsure about anything or have any concerns seek advice from a colleague, manager or another health care professional.
There may be certain professionals who can advise on specific issues. These may include a GP, district nurses, social workers, other care staff and specialists.
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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.
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.
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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.
Recognizing Approaching End Of Life
People with advanced dementia suffer from a number of distressing symptoms . In their last 12 months, nursing homes residents with dementia suffer most common from restrictions in mobility, pain, and sleeping disorder. Further frequent symptoms at the end-of-life could be identified problems with eating, trouble with breathing, apathy and anxiety. Contrary to this sleep disturbances, challenging behavior, agitation and depressive episodes occurred less frequently . Increases in distressing symptoms such as febrile infections and problems with eating and swallowing may be indicators for death in the next six months . Clinical complications such as respiratory infections are associated with highest symptom burden . Other results showed increased mortality coinciding with low body weight or low Body Mass Index . Prognostic assessment tools all include at least one criterion related to nutritional status, such as reduced appetite, inadequate food intake, malnutrition, or weight loss .
Physicians associated unexpected death with suffering and poor quality of life . Expecting death within the coming months showed positive effects on quality of end-of-life care. Prognosis estimation under six months was associated with fewer burdensome interventions in people with dementia . Among people with dementia explicitly expected to die a lower symptom burden was noticed and all of them received morphine .
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Impact On Families And Carers
In 2019, informal carers spent on average 5 hours per day providing care for people living with dementia. This can be overwhelming . Physical, emotional and financial pressures can cause great stress to families and carers, and support is required from the health, social, financial and legal systems. Fifty percent of the global cost of dementia is attributed to informal care.
What Are The Early Signs Of Dementia
The onset of dementia is not obvious because the early signs can be vague and quite subtle. The early symptoms usually depend on the kind of dementia that one has and therefore can vary greatly from one person to the next.
Even though the signs can vary, there are some that are quite common and they include:
- Depression, apathy, and withdrawal
- Memory issues, especially when it comes to the most recent events
- Inability to handle the everyday tasks
At times, it is easy to miss to appreciate that the above symptoms could be an indication of something that is not right. Yet there are those who assume that the signs are normal and are associated with aging. It is also possible for one to develop the symptoms in a gradual manner and they may go unnoticed for quite some time.
People may not act even when they can tell that something is definitely wrong. It is important to have a checklist of all signs related to dementia and get the person the needed help when several of such signs are observed. It is important to get a more detailed assessment.
Memory loss and dementia: while it is normal to forget some things and remember later, persons with dementia tend to forget more frequently and they do not remember later.
Tasks: distractions can happen and you may forget to, say, serve one part of the family meal. For a person that has dementia, preparing the meal could be problematic and they may actually forget some of the steps that are involved.
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