Dementia End Of Life: When To Call For Professional Care
It is usual to take care of a family member in their early and especially last stages of dementia. But it is still better to get help from professionals. This relieves the patients primary caregiver from responsibilities and prepares the family for what to expect of the disease.
Hospice care provides patients with the most comfortable safekeeping until their last days because of dementia. Additionally, it offers their loved ones the support they need through doctors, nurses, social workers, counselors, and other trained professionals.
Getting dementia patients hospice services doesnt mean you are giving them up. Instead, it means youre thinking of their well-being by giving them the care, comfort, and support you both need.
Its hard to see them suffering from the signs of dementia without knowing what to do. Hospice focuses on providing your loved ones the appropriate care they need to deal with the disease as easily as possible.
Setting And Study Population
This prospective observational follow-up study was part of a study to validate methods of measurement of quality of care and quality of dying with dementia in long-term care facilities in the Netherlands . From January 2008 to February 2009 two elderly care physicians in two LTCFs included patients if they met the following inclusion criteria: residing in a LTCF for30 days, a physicians diagnosis of dementia and expected to die within the next 7 days. The expectancy of a patient to die within 7 days is based on an estimation made by the treating physician and the nurses caring for the patient, and is often related to the fact that a patient has stopped eating and drinking .
The Medical Ethics review Committee of VU University Medical Center Amsterdam approved the study. Families were asked for permission for study participation by the coordinating physician who also observed the patients. Neither of the observing elderly care physicians were part of the research group.
How Long Will A Person With Dementia Live For
Dementia is a life-limiting condition, but it is very difficult to know how long someone with dementia will live for. This depends on many factors.
If the person also has another life-limiting condition , it may be clearer how long they may live for and how they will die.
A person may die from another condition at any stage of having dementia. Because of this, they may die before their dementia symptoms become very advanced.
A person in the later stages of dementia may get worse slowly over many months. During this time they will usually:
- become more frail
- have more frequent falls or infections
- have problems eating, drinking and swallowing
- be more likely to need urgent medical care
- become less mobile
- talk less often.
A person in the later stages of dementia is likely to have a weak immune system. This means they have a higher risk of getting infections, which in some cases can last for a long time. One of the most common causes of death for people with dementia is pneumonia caused by an infection.
A person in the later stages of dementia may have symptoms that suggest that they are close to death, but can sometimes live with these symptoms for many months. This uncertainty makes it very difficult to plan and put things in place for the end of someones life.
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What Challenges Can People With Parkinsons Experience Later In Life
As Parkinsons disease is a progressive condition with variable motor and non-motor symptoms, patients may face considerable problems in late stages. Impairment of functions that are difficult to manage may bring limitations in daily activities and increase dependence.
The problems in later stages of Parkinsons disease include worsening walking disorders, with postural impairment and falls speech and swallowing disorders and progressive functional disability in the hands. They can also include non-motor issues, which may have a negative impact on quality of life including fatigue and sleep problems with restless legs or REM sleep disorder, bladder problems and constipation, drooling and orthostatic episodes, mood and behavioural disorders, hallucinations and cognitive impairment.
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.
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What Is The Life Expectancy For Later Stage Dementia
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 .
How To Qualify For Hospice
If the patients physician determined the end-stage dementia life expectancy to be six months or less, they could get a hospice service. All life-limiting illnesses or diseases that no longer need high-pressure treatment are qualified for hospice.
If you are worried about the payment, most hospice is covered by health insurance such as Medicare nationwide and Medicaid in some states.
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Know How To Handle Tough End Of Life Choices For Your Dog
When your dog doesnt seem to be up for a walk, ride or is not acting like his/her usual self, it may be a sign that the end is approaching.
Your vet can be a valuable source of insight when you are trying to determine if the time is right to let go. At the end of the day however, this is an extremely personal decision that only you can make.
Just remember that our animals experience life a little differently than we do. Dogs have a wonderful way of living in the moment, which is what makes them such selfless, loving companions. But this also means that when a senior dog is in constant pain, he/she is not able to think past this discomfort.
If your older dog is at this point, a dignified end of life may be the most loving gift you can provide. To ease the emotional pain of euthanasia, some senior pet parents will allow their faithful companions to have one last bucket list day of fun. Check out this story from Bark Post about an owners amazing bucket list.
You could take your dog on a trip, provide a final meal of cheeseburgers or just spend some time expressing your gratitude before saying your final goodbyes.
Some veterinary services offer in home euthanasia. Taking a dog into the vet clinic can be a traumatic experience. This is a good alternative to provide your pet with a peaceful passing.
Your pet and you will be comfortable in your own home. Theyll receive the same professional care that they would get in a clinic.
For additional tips on caring for an aging pet .
Can A Person Die From Dementia
In the end, most people with late-stage dementia die of a medical complication related to their underlying dementia. However, its important to note that dementia itself is fatal. At times this is appropriately listed as the cause of death on a death certificate, as late-stage dementia is a terminal illness.
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Signs Of The Dying Process
As someones condition gets worse and they are within a few days or hours of dying, further changes are common. The person may:
- deteriorate more quickly than before
- lose consciousness
- develop an irregular breathing pattern
- have a chesty or rattly sound to their breathing
- have cold hands and feet.
These changes are part of the dying process when the person is often unaware of what is happening.
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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Weeks Before Death Symptoms
Several weeks before death, your loved one may start exhibit a range of behavioral changes relating to their sleeping patterns, eating habits and sociability. They may begin to sleep more often and for longer periods. They will start to refuse foods that are difficult to eat or digest, but eventually they will refuse all solid foods. Do not try to force them to eat, as it will only bring discomfort to them. Your loved one may enjoy ice during this time, since it will keep them cool while also hydrating them.
Unfortunately, your loved one may become withdrawn, less active and less communicative. They may spend more time alone introspecting and may turn down company. Some also appear to become comatose and unresponsive, but this is a symptom of withdrawal. Your loved one can still hear you, so speak in a calm, reassuring voice while holding their hand. Children may become more talkative, even if they withdraw from other activities. Its important to let your loved one set their own pace during this time. Your loved one may also start to use metaphorical language, which could be a way of coping with death. It may also be used to allude to a task they feel they need to accomplish, such as seeking forgiveness.
Common symptoms in this period also include physical changes, such as:
- Chronic fatigue
- Swelling of the abdomen, such as edema or ascites
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 .
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Cold Hands And Feet And Skin Mottling
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Hands and feet may become colder and the skin may look blotchy and purplish . It happens because the heart is no longer able to pump blood as well. As a result, blood pressure goes down and the skin grows colder.
This mottling may slowly work its way up the arms and legs. The lips and nail beds can turn blue or purple too.
Support Their Cultural And Spiritual Needs
Its good to be aware of the persons cultural and spiritual needs and make sure these are respected and supported. You can make use of any advance care plans or documents, friends and family input and your knowledge of the person. Its important to try and meet these needs as much as possible, they are just as important as medical care.
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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.
Cool And/or Discolored Skin
Also known as mottling, your loved ones skin may become darker and grayish or bluish in color, especially on the underside of the body and the extremities. This is caused by decreased circulation. Although their skin may be cool to the touch, they may not actually feel cold. Blankets can be used for warmth, but avoid using electric blankets or heating pads, which can cause burns.
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Making Medical Decisions For People With Dementia
With dementia, a persons body may continue to be physically healthy. However, dementia causes the gradual loss of thinking, remembering, and reasoning abilities, which means that people with dementia at the end of life may no longer be able to make or communicate choices about their health care. If there are no advance care planning documents in place and the family does not know the persons wishes, caregivers may need to make difficult decisions on behalf of their loved one about care and treatment approaches.
When making health care decisions for someone with dementia, its important to consider the persons quality of life. For example, medications are available that may delay or keep symptoms from getting worse for a limited time. Medications also may help control some behavioral symptoms in people with mild-to-moderate Alzheimers or a related dementia. However, some caregivers might not want drugs prescribed for people in the later stages of these diseases if the side effects outweigh the benefits.
It is important to consider the goals of care and weigh the benefits, risks, and side effects of any treatment. You may need to make a treatment decision based on the persons comfort rather than trying to extend their life or maintain their abilities for longer.
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.
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Survival And Comfort After Stopping Anh
A study of predictors of survival among 178 Dutch nursing home patients with dementia who had ANH withdrawn or withheld showed that 59% of patients died within 1 week. Patients who were considered more severely ill, had dyspnea, or experienced apathy were more likely to die within the week. Longest length of survival happened in patients who were still able to take small amounts of fluids.12 Another important finding is that the level of discomfort decreases in the days after the decision is made to forgo ANH. Most patients are probably asleep or comatose shortly before death. Because of the observational nature of the study and the lack of a reference group, conclusions should be drawn carefully. Nevertheless, it seems that forgoing ANH in patients with severe dementia who scarcely or no longer eat or drink is not associated with high levels of discomfort.
How To Give Care In The Final Stages Of Dementia
If your loved one is in the last stages of dementia, your goal may be to allow them to live as well as they can until death. This will involve the following:
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