Caring For Someone With Dementia Towards The End Of Life
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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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Initial Causes 10 Signs Death Is Near Dementia
There are several different causes of memory loss. Some cause this condition in the young, while others may be more gradual. If you notice that your memory is weakening, its important to consult a medical professional. Whether the cause is mental illness, age, or a combination of factors, its important to seek treatment as soon as possible. People with extensive memory loss may have social difficulties and anxiety, which can lead to depression. They may be afraid they are letting their loved ones down, which can lead to anxiety and depression. 10 Signs Death Is Near Dementia
Fortunately, there are many causes of memory loss, and many of them are treatable. However, if you are experiencing serious memory problems, you may need medical treatment. If you have been undergoing any type of medication, you should consult with your doctor. Some people have other underlying conditions that may be causing their loss of memory. Alcohol abuse, sleep deprivation, or other mental health conditions can cause memory problems. You should seek out a medical professional if you suspect youre suffering from any of these conditions.
Practical Tips For Easing The Signs Of Death
It is a frightening and confusing time when you have a loved one who needs end-of-life care.
Weve got you covered with our comprehensive list of questions to ask the palliative care staff regarding your loved ones care.
We also have practical tips for how to make your loved ones last weeks and hours of life more comfortable. Simple things like how you position his body in bed, or how you give him water, will make a world of difference.
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What To Expect At The End Of Life
The way people with Alzheimerâs disease die is different from person to person, but thereâs a basic pattern to the process. They slowly lose the ability to control basic body functions, such as eating, drinking, and toileting. After a while, their body shuts down.
They canât move much on their own. They donât want to eat or drink, and they lose weight. They often get seriously dehydrated. It can get hard for them to cough up fluid from their chest. In the last stages, many people with dementia get pneumonia.
Some other common signs that someone with Alzheimerâs disease is close to the end of their life include:
- They speak very few or no words.
- Theyâre not able to do very basic activities such as eat, move from a bed to a chair, or change their position in a bed or chair.
- They canât swallow well.
- They get sores because they sit or lie in the same position for too long. These are called bedsores or pressure ulcers.
What To Do If You Suspect Alzheimers Disease
Getting checked by your healthcare provider can help determine if the symptoms you are experiencing are related to Alzheimers disease, or a more treatable conditions such as a vitamin deficiency or a side effect from medication. Early and accurate diagnosis also provides opportunities for you and your family to consider financial planning, develop advance directives, enroll in clinical trials, and anticipate care needs.
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Greater Risks Of Alzheimers And Dementia For Blacks And Latinos
18.6% of Blacks and 14% of Hispanics age 65 and older have Alzheimers compared with 10% of White older adults .
- Other prevalence studies also indicate that older Blacks are about twiceas likely to have Alzheimers or other dementias as older Whites.
Are There Any Treatments For Dementia
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.
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Who Has Alzheimers Disease
- In 2020, as many as 5.8 million Americans were living with Alzheimers disease.1
- Younger people may get Alzheimers disease, but it is less common.
- The number of people living with the disease doubles every 5 years beyond age 65.
- This number is projected to nearly triple to 14 million people by 2060.1
- Symptoms of the disease can first appear after age 60, and the risk increases with age.
Alzheimers Is The Only Top
- 1 in 3 seniors dies with Alzheimers or another dementia, killing more than breast and prostate cancer combined.
- Alzheimers disease is listed as the sixth leading cause of death in the U.S. States, but it may cause more deaths than is recognized by official sources.
- The COVID-19 pandemic caused Alzheimers deaths to increase by approximately 16% more than expected.
- Deaths due to Alzheimers between 2000 and 2019 have more than doubled, increasing 145%. During the same time period, deaths from heart disease increased 7.3%.
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Place Of Care In The Last Phase Of Life
In developing palliative care for people with advanced dementia, it is important to consider circumstances of care such as place of care or where the person dies. The majority of people with early stage dementia live at home with family members caring for them. Approximately one third of people with dementia are cared for in nursing homes . A survey identified dementia in 68% of nursing home residents with only slightly more than half having recorded diagnosis and with more than half suffering from advanced dementia . People in the advanced stages of dementia spend most of their time in nursing homes . The likelihood of nursing home admission increases with age and severity of behavioural symptoms high burden of family carers is also associated with nursing home admission . People with migration background are less often cared for in nursing homes .
How Can I Communicate With A Person With Dementia At End Of Life
There are ways to keep communicating with a person with dementia at end of ilfe.
For example, the person may be able to show their needs or feelings using their body or facial expressions. They may still sense what is going on around them and be able to respond with basic gestures, such as smiling or hand squeezing. They may also become distressed if they hear harsh noises or commotion.
Tips for communicating with the person with dementia at the end of life
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Complex Interventions In Advanced Dementia
As people with advanced dementia suffer complex symptoms and still have numerous and complex physical, psychosocial and spiritual needs they are in need of multidisciplinary health care. By comparison with early stages of the disease there is less knowledge about needs in advanced dementia . Physical needs are related to adequate symptom relief and basic care needs. It is complex to meet the numerous and differentiated psychosocial needs comparable to people in moderate state of dementia, e.g., need of enhancing personhood, communicating and being in contact with others, participating in everyday life or feeling save and familiar . Unmet social needs for activity contributed to discomfort and behavioral symptoms . Needs being important in mild or moderate stage of the disease, e.g., financial needs and cognitive strategies for coping with disease are less direct needs at least for the people with advanced dementia themselves.
Common Symptoms And Complications Treatment Options
As the disease progresses people with dementia become more and more dependent on other persons for almost all daily activities, care and treatment, t suffering considerable limitations in the last year . As shown above people with advanced dementia suffer a range of complex needs and symptoms, and symptom burden is similar to people with cancer or frailty . People with advanced dementia rarely express their needs and burdensome symptoms spontaneously, relying on their caregiversâ sensitive perception and interpretations of their verbal and nonverbal signs.
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Could Dementia Be Reversible
The researchers are calling for a closer examination of this area in order to better understand dementia, and in particular whether it could even be reversible.
Weve assumed that advanced dementia is an irreversible neurodegenerative process with irreversible functional limitations, said Prof Mashour, professor in the department of anesthesiology in the neuroscience graduate program and director of the Center for Consciousness Science.
But if the brain is able to access some sort of functional network configuration during PL, even in severe dementia, this suggests a reversible component of the disease, he said.
How Can Carers Family And Close Friends Of Person At End Of Life Get Support
Most people find it difficult to come to terms with the person with dementia approaching the end of life. Many carers say theyve already started grieving while the person is alive and as the dementia has progressed. This may be because of the dementia progressing over a long period of time, and the changes that they are seeing in the person.
You should tell health and social care professionals about your own wishes, including the need to say goodbye to the person and whether you want to be with them at the end of their life, if this is possible. You may have your own spiritual and cultural needs and as a carer, its important that you are supported to express these and have them met.
Talk to hospital or community nurses or nursing home staff about how they can support you, including whether any spiritual or faith-based support is available. You may also find it helpful to turn to a religious leader or representative for support during this time, for example a rabbi, imam, priest or chaplain.
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Periods Of Clarity Before Dying Has Been Well Studied
There have been several studies of patients becoming surprisingly lucid while living with severe dementia, with most showing PL mainly occurs within several days of death.
One study of 49 cases described by carers, found that 43 per cent of PL episodes occurred within the last day of life, 41 per cent within 2-7 days before death, and 10 per cent within 830 days of death.
In a separate study, it was found that PL seems to take place within 1 or 2 days before death.
A study by researcher Alexander Batthyany followed 38 cases, and found 44 per cent occurred within 1 day before death, 31 per cent within 2 to 3 days, and 6 per cent within 47 days before death.
Similarly, in a study of end-of-life experiences, seven out of ten caregivers in a nursing home reported they had observed patients with dementia and confusion becoming lucid a few days before death.
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.
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Practical Guide For Caregivers
This is a practical guide for every caregiver looking after a loved one in palliative care. Being a caregiver for a dying loved one is a highly stressful and time-consuming responsibility.
It is vital that you take time out to recharge your batteries and to manage your stress levels. Left unchecked, long-term stress can lead to burnout, depression, and other adverse health consequences.
Keep reading to find practical tips for dealing with emotional and physical stress.
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.
How Might Lockdowns And Coronavirus Restrictions Affects Funerals And Wakes
If there are lockdowns or restrictions due to coronavirus, these may affect funerals, wakes and other events. For example, there may be travel restrictions, or a limit on the number of people that are able to attend. If this happens, you may feel you are not able to say goodbye to the person in the way you would have wanted. This can be extremely upsetting.
Speak to the funeral venue about what might be possible. For example, it may be possible for some people to attend virtually, using a video link on their computer or tablet. Finding other ways to remember the person may also be of some comfort during this time. For example, some people may like to pay their respects to the person via tributes on social media or you could create an online memory board.
Dementia Connect support line
Darkened Urine And Decreased Urination
At the end of life, urine output may decrease significantly or stop altogether. These symptoms are caused by reduced fluid intake and kidney function. In some cases, a catheter may be appropriate for preventing urinary retention, obstruction and skin breakdown, which can be very uncomfortable and trigger agitation. A member of your loved ones health care team can provide instructions on catheter care if catheterization is recommended.
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Irregular Breathing Patterns And Sounds
Changes in breathing at the end of life are very common, especially for patients with lung disease. Your loved ones breathing may become shallow and alternate between rapid and slow. Changes in heart rate can accompany altered breathing patterns.
Sometimes breathing is characterized by rattling or gurgling soundsoften referred to as the death rattle. Noisy breathing is caused by the relaxation of muscles in the throat and the accumulation of secretions in the upper respiratory tract. Although labored breathing can sound very distressing for attending family members, these sounds usually do not cause discomfort for the patient.
A patient may be able to breathe easier when sitting up at a 45-degree angle with increased support or when lying on their side with pillows placed beneath their head and behind their back. Oxygen therapy may benefit some patients. If your loved one is able to swallow, ice chips may also help. Placing a cool mist humidifier in their room may provide added comfort as well.
When Death Takes Place
You might not know right away that your loved one has died, especially if their breathing has been quiet and theyve been unconscious. If a heart monitor is attached, it will alert you that their heart has stopped. If not, you may notice that their breathing and heart have stopped. If youre unsure, you should ask a health care provider for assistance.
Its your right to spend some time with your loved ones body after their death, if you wish. You can take some time to say goodbye before alerting medical staff or calling the funeral home. On the other hand, if this makes you feel uncomfortable or you otherwise prefer not to remain in the room with your loved one after their death, thats also fine.
If youve been taking care of a dying loved one for some time, their death is likely to bring a wide range of emotions. Its a good idea to talk about the grief and other feelings that follow a loved ones death. Grief counseling and grief support groups are there for you as soon as youre ready to connect with others who will understand. You can find comfort in Legacys online support groups.
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What Are The Symptoms Of Dementia 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.