Questions To Ask About End
As a caregiver, you will want to understand how the available medical options presented by the health care team fit with the needs of both the family and the person with dementia. You might ask the health care team questions such as:
- Who can help me with end-of-life care for my loved one living with dementia?
- How will your suggested approaches affect their quality of life?
- What are my options if I can no longer manage the care of my loved one at home?
- How can I best decide when a visit to the doctor or hospital is necessary?
- Should I consider hospice at home, and if so, does the hospice team have experience working with people living with dementia?
Provide Physical Comfort And Care
Assess the person to ensure they are not in discomfort or restless, and offer the kind of care described in the above section . Reduce any interventions to only what is necessary, for example change the persons position every few hours or when they need changing.
Give regular mouth care. This can be done hourly to prevent the persons mouth from becoming dry. Apply Vaseline to keep lips moist.
Give eye care, for example use a soft piece of wet clean gauze to prevent the persons eyes from looking sticky.
How Hospice Can Help With End
In addition to helping you in recognizing the signs of dying in the elderly with dementia, bringing in hospice care will help with the physical and emotional demands of caregiving. Nurses will be able to adjust medication and care plans as the individuals needs change. Aides can help with bathing, grooming, and other personal care. Social workers can help organize resources for the patient and family. Chaplains and bereavement specials can help the family with any emotional or spiritual needs. Additionally, family members can contact hospice at any time, and do not need to wait until it is recommended by the patient’s physician.
To learn more about the criteria for hospice eligibility or to schedule a consultation, please contact Crossroads using the blue Help Center bar on this page for more information on how we can help provide support to individuals with dementia and their families.
Recommended Reading: Why Do Dementia Patients Sleep So Much
What Are The Signs Of End
It is important for caregivers to know when an individual with dementia is close to the end of their life, because it helps ensure they receive the right amount of care at the right time. It can be difficult to know exactly when this time is due to the variable nature of dementias progression, but understanding common end-of-life symptoms of seniors with dementia can help. Below is a timeline of signs of dying in elderly people with dementia:
Final Six Months
- A diagnosis of another condition such as cancer, congestive heart failure or COPD
- An increase in hospital visits or admissions
Final Two-to-Three Months
- Speech limited to six words or less per day
- Difficulty in swallowing or choking on liquids or food
- Unable to walk or sit upright without assistance
- Incontinence
- Hands, feet, arms and legs may be increasingly cold to the touch
- Inability to swallow
- Terminal agitation or restlessness
- An increasing amount of time asleep or drifting into unconsciousness
- Changes in breathing, including shallow breaths or periods without breathing for several seconds or up to a minute
Patients with dementia are eligible to receive hospice care if they have a diagnosis of six months or less to live if the disease progresses in a typical fashion. Once a patient begins experiencing any of the above symptoms, it is time to speak with a hospice professional about how they can help provide added care and support.
How To Help Your Loved Oneand Yourselfcope
It’s terrible to learn that a loved one is reaching the end of their life. But knowing what to expect can make you more prepared for what will happen.
If you’ve hired hospice professionals , they can help make your loved one’s last months, weeks, and days as comfortable as possible. They can also support you as you go through this difficult time.
This article will discuss 12 signs that a person is nearing the end of their life. It also suggests ways you can help your loved one cope with the final stages.
Don’t Miss: How To Talk To A Person With Alzheimer’s
Feeding In The Final Stage Of Life
In their final stage of life, it is common for dementia patients to require artificial nutrition and hydration methods. The two most common forms are:
Not all patients are candidates for artificial nutrition, and some are not able to tolerate much liquid at the end of life. There are other methods of optimizing and adapting traditional feeding methods that our staff can assist in educating you with. A few of these are using a thickener for liquids, pureeing or chopping food, and being sure the person is upright when eating.
Hospice of South Louisiana is equipped to assist with our patients artificial alternate nutrition and hydration needs. When our patients lose interest in consuming food, we make sure their lips remain moist and clean.
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.
You May Like: How To People Die From Dementia
Eating And Drinking/eating Problems
Over the course of the disease difficulties in eating become more and more manifest with consequently reduced food intake and need for support with eating and drinking. People with advanced dementia have problems to swallow adequately. Moreover, they tend to keep food in their mouths, stop chewing or spit out food. In the last month of life difficulty with swallowing was found in 42% of persons and 32% exhibited observable weight loss . Advanced dementia is a risk factor for aspiration followed by pneumonia . Instances of reduced food intake dictate that acute medical events need to be examined, as possible causes for eating problems, these include. acute infections, pain, inadequate oral health, medication related side effects, and stroke . Dementia is often accompanied by deterioration in oral health and oral hygiene which, among other possibilities, may be induced by medication side effects of dry oral mucosa and possible subsequent damage to the oral cavity and teeth. Living with sore mouth is very burdensome, causes pain, hinders use of dental prosthesis and often reduces food intake of people with advanced dementia. Educating caregivers about oral hygiene has great potential for improving the oral health of people with dementia .
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.
Read Also: How Does Dementia Affect Hearing
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.
Care In The Last Days Of Life With Dementia
We use the words dying or terminal to describe when a person is in the last few days or hours of life. Sometimes a death is sudden and unexpected. More often, though, a person shows signs that they are dying: it is important to recognise these and plan ahead. This section will help you to anticipate and manage symptoms, as well as provide some tips to help prepare family and loved ones through what is a highly emotional and uncertain time.
I dont want my mother to die alone. I want her to be comfortable and to die with dignity.
A daughter of a person with dementia.
Recommended Reading: Can Dementia Start At 40
Special Prerequisites Of Palliative Care In Advanced Dementia
Originally, palliative care emerged in the UK for cancer patients in response to insufficient care for the terminally ill. Eventually conditions other than cancer were acknowledged as being in need of palliative care. Independent of specific diagnosis palliative care should be provided for people with life-threatening disease and their families âthrough the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritualâ to maintain or improve quality of life . Parallel to the development of palliative care dementia care developed separately both based on the same values for enhancing care of people with dementia and improving quality of life . Notably lessons learned from palliative care for people with cancer cannot simply be transferred to palliative care for people with dementia.
As dementia progresses people experience reduced or lost verbal communication abilities with a consequent impact on care. Despite restrictions in verbal communication people with advanced dementia can use other means of nonverbal communication such as body tension or minimal movements, turning their head away, frequency of breath and paralinguistic signals are all means of communication to express their current wishes or needs . Agreement or rejection reactions in a situation can be observed, although interpretation of nonverbal communication varies between health professionals .
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.
Recommended Reading: How To Help Alzheimer’s Caregivers
Signs Of Dying In The Elderly With Dementia
Dementia is a general term for a chronic or persistent decline in mental processes including memory loss, impaired reasoning, and personality changes. Alzheimers disease is the most common form of dementia, accounting for 60-80% of all cases of dementia. It is also the 6th leading cause of death in the United States, and over 5 million Americans are currently living with Alzheimers disease.
Alzheimers disease and most progressive dementias do not have a cure. While the disease inevitably worsens over time, that timeline can vary greatly from one patient to the next.
Caring for a loved one can be challenging and stressful, as the individuals personality changes and cognitive function declines. They may even stop recognizing their nearest and dearest friends and relatives. As dementia progresses, the individual will require more and more care. As a family caregiver, its important to be able to recognize the signs of dying in elderly with dementia. Hospice can help by offering care wherever the individual resides, providing physical, emotional and spiritual care to the patient and support their family.
What Are The Symptoms Of Dementia
Each person is unique and will experience dementia in their own way. The different types of dementia tend to affect people differently, especially in the early stages.
A person with dementia will often have cognitive symptoms . They will often have problems with some of the following:
- Day-to-day memory difficulty recalling events that happened recently.
- Repetition repeating the same question or conversation frequently in a short space of time.
- Concentrating, planning or organising difficulties making decisions, solving problems or carrying out a sequence of tasks .
- Language difficulties following a conversation or finding the right word for something.
- Visuospatial skills problems judging distances and seeing objects in three dimensions.
- Orientation losing track of the day or date, or becoming confused about where they are.
Some people have other symptoms including movement problems, hallucinations or behaviour changes.
Also Check: Can Low B12 Cause Dementia
Caring For Someone With Dementia Towards The End Of Life
Please be aware – this information is for healthcare professionals. We also have information for the public.
You can use our My Learning form to reflect on how this page has helped with your continuing professional development.
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.
On this page:
Tips For Managing Dementia End
Because individuals with advanced dementia will often have difficulty communicating, it is important that caregivers keep a close eye on their loved one for signs of pain or discomfort. These signs may include moaning or yelling, restlessness or an inability to sleep, grimacing, or sweating. This may also signal that its time to call hospice or a palliative care team to help with the pain management.
If an individual with end-stage dementia is having trouble sitting up without assistance, hospice can provide a hospital bed or other equipment to lift their head.
Perhaps the hardest thing for families is when a loved one with dementia is no longer able to eat or swallow. Because an individual with dementia is unable to understand the benefits of feeding tubes or IV drips, they will often be incredibly distressed and attempt to remove them, causing added pain and risk of infection. Instead, focusing on keeping the individual comfortable. Supporting them with mouth care to prevent their mouth from becoming dry will allow them to make their final transition in peace.
You May Like: Does Drinking Out Of Aluminum Cans Cause Alzheimer’s
Be Aware Of Their Eating And Drinking
The person may have lost their appetite or have difficulties swallowing safely. In the last days, the person may stop eating or drinking. This can be very distressing to watch, but it is normal for people approaching the end of life.
You should offer the person food and drink for as long as it is safe and they show an interest. Its important to keep the persons mouth comfortable provide sips of fluids and keep lips moist and clean.
Relevance To Clinical Practice
This study suggests that there is a need for trained nurses specialising in palliative care or dementia care at nursing homes in order to meet the challenges described with appropriate skills and knowledge. There is also a need for resources and strategies for informing relatives about end-of-life care and sometimes involving them in decision-making.
Don’t Miss: Why Is Alzheimer’s Becoming More Common
What This New Study Reveals About Hospice Care
Researchers at the University of California San Francisco and Icahn School of Medicine at Mount Sinai, New York City, looked at the medical records of 2,059 seniors over 70 who died between 2011 and 2017. Of those, 40 percent had a diagnosis of dementia, and 59 percent of those used hospice care.
The overall goal of hospice care is to provide dignity, supportive, and comfort measures to end-of-life patients and their families, says Gail Trauco, RN, BSN-OCN. It includes regular visits by nursing staff, social workers, and clergy and is provided at the patients residence, an assisted living or nursing home, a dedicated area of a hospital, or a freestanding hospice.
Most often, children or spouses, proxies for the patients, provided information on end-of-life care their loved ones received. The finding included:
- 52 percent described the care as excellent compared to 41 percent of non-hospice patients
- 67 percent indicated that sadness and anxiety were managed as compared to 46 percent of non-hospice patients
- Hospice enrollees were less likely to be switched to a different care setting in the days before their death
Krista L Harrison, Ph.D., an assistant professor in the UCSF Division of Geriatrics, was surprised by the findings, We honestly expected it not to be positive. Since the hospice model was designed for patients with cancer we expected end-of-life care to be worse for people with dementia,
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 do not 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.
Also Check: Why Do Dementia Patients Get Angry
Communication Challenges: Assessing And Relieving Pain
Uncertainties when assessing pain
Many nurses found it challenging to assess pain. A common cause of uncertainty was when the cognitive impairment of dementia affected the persons ability to verbally express if they experienced pain, which becomes a barrier to assess if pain medication has achieved an optimal level of pain relief. As one nurse said: It is difficult, because most of them you cannot ask and get a clear answer from . The nurses thought that asking the residents with advanced dementia about their pain was the first step in pain assessment. When verbal communication was impossible, the nurses then focused on the interpretation of pain expressions: verbal expressions such as groaning and screams, and nonverbal expressions such as anxious behaviour and body language including facial expression. Several nurses found distinguishing pain from anxiety challenging: It is really hard to assess pain and it is not easy to interpret whether it is about pain or anxiety . The similarity of expressions of pain and anxiety made the nurses feel uncertain.
Another communicational challenge that caused uncertainty was if the nurses lacked an earlier relationship with the residents with advanced dementia. That made pain assessment more difficult for example, it is then impossible to compare current behaviour with past behaviour. As expressed by one nurse:
Uncertainties when administering pain relief