What Can Hospice Do For The Family Of A Patient With Dementia
Family members may have to make difficult healthcare and financial decisions, act as caregivers and provide emotional support to others. If the decision is made to stop medical support, families often experience strong emotions and feel overwhelmed.
Hospice offers comprehensive services for families of patients with dementia:
Caregiver education and training The family caregiver is vital in helping hospice professionals care for the patient. As the patient gets weaker, symptoms increase and communication becomes more difficult. We relieve families concerns by educating them on how best to care for their loved one.
Help with difficult decisions Hospice helps families make tough choices that impact the patients condition and quality of lifefor example, whether to give antibiotics for a recurring infection.
A VITAS nurse by phone 24/7 Even the most experienced caregivers will have questions and concerns. With Telecare®, they dont have to wonder, worry or wait for an answer. As the heartbeat of VITAS after hours, Telecare® provides trained hospice clinicians around the clock to answer questions or dispatch a member of the team to the bedside.
Emotional and spiritual assistance Hospice meets the needs of loved ones along with those of the patient.
Respite care Caring for a loved one with an end-stage illness can cause tremendous stress. Hospice offers up to five days of inpatient care for the patient in order to give the caregiver a break.
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.
Weeks Before End Of Life
Some of the earliest signs have to do with a sense of resignation. That may involve low mood, lack of motivation, and withdrawal. The person may spend more time reminiscing about their childhood and earlier life experiences.
Loss of appetite, general weakness, and increasing fatigue become noticeable.
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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.
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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What Are The Overall Benefits Of Hospice Care
If you or a loved one is facing a life-limiting illness, you may have heard the term hospice. Friends or family might have told you about the specialized medical care for patients or the support services for loved ones. But most people are unaware of the many other benefits of hospice.
Comfort. Hospice works with patients and families to give them the support and resources to assist them through this challenging chapter of life and help them remain in comfortable and familiar surroundings.
Personal attention. When the hospice team works with a patient or family, they become participants in the end-of-life process, a very personal experience for any individual. The hospice mission is to care for each person individually. We listen to patients and loved ones. We advocate for them. We work to improve their quality of life.
Reduced rehospitalization. In the last months of life, some people who are seriously ill make frequent trips to the emergency room others endure repeated hospitalizations. Hospice care reduces rehospitalization: a study of terminally ill residents in nursing homes shows that residents enrolled in hospice are much less likely to be hospitalized in the final 30 days of life than those not enrolled in hospice 1.
1 Miller SC, Gozalo P, Mor V. Hospice enrollment and hospitalization of dying nursing home patients. American Journal of Medicine 2001 111:38-44
How Long Dementia Lasts Before Death
Those with dementia will have their lifespan shortened. The duration of illness varies, but the median age from diagnosis to death is 4-5 years. Women tend to survive longer with the disease than men, 4.6 to 5.1 years compared to 4.1 to 4.3 years. The type of dementia also affects how long a person has left to live those with vascular dementia or Lewy Body Dementia die sooner than those with Alzheimers.
Mostly, the patient spends the longest time periods in the moderate and advanced stages of the disease. Women live the longest time in the advanced stage compared to men. And those who are older than 70 years and have Alzheimers disease seem to spend an average of four years in advanced dementia.
Not everyone with dementia makes it to the advanced stage. Only one-fourth of them do and moderate stages of dementia will take half of the dementia victims.
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When Do Dementia Patients Stop Eating
When a patient stops or refuses to eat, things can be very depressing for the caregiver. Drinking and eating are complex and have to do with a control center that is within the brain, which controls the muscles in the throat and neck area.
Dementia affects this part of the brain as it progresses and things like choking, coughing, grimacing as one swallows, clearing the throat, movements that are exaggerated, especially of the tongue and mouth, refusing to swallow, and spitting the food can be seen. This usually happens in the later stages of the disease.
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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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 .
What Do Elderly People Think About Life And Death
As we get older, death seems to be nearer than when we are younger. In as much as anyone can die regardless of age, for an older person, it seems like it is more likely to happen, especially when dealing with different health conditions that the body does not handle as it used to in the younger years.
For older persons, death does not always spell sorrow and terror, as is the case with younger people. Many of the older people are contented with what the short-term future has for them. You may think that people may get anxious as they become older, but this is not the case. Older people do not have much sadness and anxiety, especially related to death. They are actually more positive about life and death.
As we grow older, our perspective shifts. This is when you realize that things are not as they always seem. Most people fear death because they feel that they will lose the things that they have been working so hard to get over the years. However, for older people, this attachment to things acquired is not really pronounced. This is how some of the fear of death actually melts away.
When you look around you and you realize that there are things that are a part of you that will outlive you actually help in a major way. This could be the legacy we have in children or gardens planted. There are yet others who place value on their country, their religion, or families that live on even after they are gone.
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Saying Goodbye When The End Is Near
Rachael Mierke got the call at 2 a.m. from a nurse at the long-term care home letting her know her fatherâs breathing had changed significantly and that the end was near. Rachael appreciated and was comforted by the nurseâs compassionate words. âShe said, âIâll stay with your dad until you come, so he isnât alone.â I knew someone was watching over him and that she cared. That was beautiful â that intimacy and thoughtfulness,â says Rachael, a First Link® Coordinator with Alzheimer Society of Manitoba in Winnipeg.
As a former palliative care nurse, Rachael recognized the familiar pattern of end-stage breathing as soon as she arrived in the room and saw her dad. He liked country and western music, so she put on some Johnny Cash songs in his room. âWe watched him and kept the music quiet because dad was a quiet man. I said we were with him and loved him. I talked about how he had been a good father and about all the good things he had done. I believe hearing is the last thing to go and thought that if he could hear us it would be soothing,â she says.
Importance Of Advance Care Planning For People With Dementia And Their Caregivers
Someone newly diagnosed with dementia might not be able to imagine the later stages of the disease. But when a person is first diagnosed with Alzheimers or another dementia, its important to make plans for the end of life before the person with the disease can no longer complete advance directives and other important legal documents. End-of-life care decisions are more complicated for caregivers if the dying person has not expressed the kind of care they would prefer.
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Increased Difficulty Controlling Pain
It is important to provide pain medications as prescribed by your loved ones health care team. Be sure to contact their doctor if the prescribed dosage does not seem effective or if side effects become troublesome. Alternative pain management methods, such as massage, music therapy and relaxation techniques, may be used in conjunction with pharmaceuticals to minimize anxiety and discomfort.
Incontinence And Toilet Issues
Another example of end-stage dementia signs is toilet problems and incontinence. As the illness progresses, there is a possibility that the person will EXPERIENCE some accidents while trying to use the washroom.
It can be anything from the occasional urine or fecal leaks or a total loss of control when the person needs to use the toilet.
Many factors can cause this, such as:
- Forgetting where the facilities are or forgetting to visit the toilet in time
- Constipation
- Not recognizing the need to use the toilet
- Prostate gland issues, etc.
To avoid inconvenience, there are many incontinence products that patients with dementia can use.
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How Do You Know When A Dementia Patient Is Dying
Since a patient with dementia may have trouble communicating, its important to monitor for signs of pain or discomfort. End-stage dementia symptoms may indicate that the patient is dying or close to death:
- Problems with everyday functions, including bathing, dressing, eating, and going to the bathroom
- Inability to walk or sit up in bed without assistance
- Inability to speak and show facial expressions
- Dehydration and malnutrition due to trouble swallowing, eating, and drinking
- Increased risk of medical conditions such as urinary tract infections, aspiration pneumonia, skin breakdown, pressure ulcers , or blood clots
- Agitation, restlessness, moaning, and changes in breathing
Signs Death Is Near For Dementia
Health professionals arent the greatest at determining how long a person with dementia has to live. In one study, staff expected only 1% of nursing home residents with dementia to die within 6 months. However, 71% of them died during the six months.
Of course, saying exactly when a person will die is nearly impossible, even for medical professionals. There are signs death is near, however.
The following signs death is near for dementia patients are not necessarily imminent signs, not like a death rattle or failing lung function. These are signs that death is getting closer, however. Perhaps much closer.
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For Patients Speaking To Families
Education is key. Educate yourself first. By now, youve probably done some research on this website. It might also be helpful for you to learn some common misconceptions about end-of-life care, as your family may be misinformed about the realities of hospice. View our video on dispelling hospice myths. Read and share “Considering Hospice: A Discussion Guide for Families” at HospiceCanHelp.com
Determine what your loved ones know. Before bringing up hospice, make sure your loved ones have a clear understanding of your health status. People handle difficult information in different ways. If family members are not accepting or understanding of your prognosis, you might want to have your physician, clergy or a trusted friend speak with them on your behalf.
Discuss your goals for the future, as well as theirs. As a patient, your greatest concern might be to live without pain, or to stay at home, or to not become a burden. Ask your loved ones what their concerns are when they consider the coming months, weeks and days. Explain that hospice is not giving up. It is an active choice to ensure that everyones needs are met.
Take initiative. Remember, its up to you to express your wishes. Sometimes, out of concern for your feelings, your family or loved ones might be reluctant to raise the issue of hospice for you.
Data Collection And Criteria
The aim of the study was to estimate the prevalence and intensity of dyspnea, pain, and agitation among dying patients with dementia compared with those dying with cancer. This study used both prospective and retrospective data, which were obtained from electronic health records. We evaluated the hospital database to identify patients with dementia, and patients with cancer, who died from 1 June 2013 to 31 December 2017. Patients were considered eligible for the study if they were at least 18 years old, had a physicians diagnosis of late stage dementia and a Cognitive Performance Scale of 5 or 6 , or advanced cancer , and had an observation period of at least 3 days before death. If the same patient had dementia, and cancer, the disease was coded as cancer. We also collected general information on admission like age, gender, length of stay , and baseline Karnofsky Performance Scale . The ethical committee of the Fluminense Federal University approved the study and provided waiver of patient consent.
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Support For Carers And Family
Coming to terms with the impending loss of someone you may have helped care for over a period of time is difficult and upsetting.
Talk to the healthcare professionals about your own concerns and wishes. These may include reassurance that the person’s pain is being properly managed or the need to be with them at the end of their life.
After the death of a loved one, you’ll experience bereavement in your own way. It’s important that you’re supported in this process.
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Eating a healthy diet is an excellent memory loss remedy. It should consist of fruits and vegetables, as well as whole grains and low-fat proteins. Avoid alcohol and drugs, which can also cause confusion and memory loss. Its important to follow your doctors recommendations, and review your medications regularly. If you suspect a medical condition, you may want to consult a medical professional for a diagnosis and treatment. This way, a physician can prescribe the right medication. Signs of Dying in the Elderly With Dementia
Eating a healthy diet is an effective memory loss remedy. A diet rich in fruits and vegetables can improve your memory. A balanced diet can also help you to retain information longer. Try to consume at least five servings of these foods a day. The berries contain anthocyanins and flavonoids, which can be very helpful in fighting memory loss. A study of 16,000 women found that those who ate more berries were less likely to suffer from cognitive decline. Turmeric root contains a substance called curcumin, which is found in high concentrations. This compound is a powerful antioxidant that has anti-inflammatory effects.
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