When The Person With Alzheimers Can’t Move
During the later stages of Alzheimers disease, a person may lose the ability to move and spend much of his or her time in a bed or chair. This lack of movement can cause problems such as pressure sores or bedsores, and stiffness of the arms, hands, and legs.
If the person with Alzheimers cannot move around on his or her own, contact a home health aide, physical therapist, or nurse for help. These professionals can show you how to move the person safely, such as changing positions in bed or in a chair.
A physical therapist can also show you how to move the person’s body joints using range-of-motion exercises. During these exercises, you hold the person’s arms or legs, one at a time, and move and bend it several times a day. Movement prevents stiffness of the arms, hands, and legs. It also prevents pressure sores or bedsores.
To make the person more comfortable:
To keep from hurting yourself when moving someone with Alzheimer’s disease:
Assessment Of Treatment Implementation
Burgio et al160 reviewed difficulties and provided suggestions in the assessment of treatment Implementation in interventions with older adults in the last issue of Alzheimers Care Quarterly. Treatment implementation consists of 3 components: delivery, receipt, and enactment. Certainly, the most basic rule of well-designed and relevant clinical research is clearly conceptualizing what kind of treatment is needed and then to deliver that treatment in a consistent manner. Development of effective psychosocial interventions for individuals with AD and their families at the end of life should begin with a therapeutic needs assessment. Once the basic needs of individuals with late-stage AD and those of their families are identified, standardized protocols are needed for interventionists to accurately and consistently deliver the treatment. For example, interventionists could be trained to use standardized evaluations of treatment consent capacity and advance planning in the context of familial advance planning evaluations13,109 that are audiotaped for quality control. A predetermined percentage of these audiotaped evaluations could be monitored by clinical supervisors to ensure that all families of individuals win AD receive the same information, support, and encouragement in approaching life-prolonging medical treatment decisions .
Methodological Issues In Research With Individuals With Ad And Families At The End Of Life
Our review of issues surrounding the end of life for individuals with AD and their families illustrates the dramatic need for clinical practice guidelines and clinically relevant research. Research regarding end-of-life issues in general is in its infancy, and targeted investigation of the needs of individuals and families within the context of late-stage AD is even less well developed. Part of the reason for this is our reluctance as a society to consider and actively address our own mortality and the mortality of those whom we love. Thus, as our society becomes more aged, the needs of individuals and families at the end of life will garner greater attention in clinical, research, and policy arenas. At this time, most of what we offer are suggestions regarding critical methodological issues to be considered in clinically relevant research in this area. Given our interest in the psychosocial issues surrounding end-of-life care, we will focus our comments on these methodological issues.
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Important Legal Documents You May Need As You Age
There are many different types of legal documents that can help you plan how your affairs will be handled in the future. Many of these documents have names that sound alike, so make sure you are getting the documents you want. Also, State laws vary, so find out about the rules, requirements, and forms used in your State.
Wills and trusts let you name the person you want your money and property to go to after you die.
Advance directives let you make arrangements for your care if you become sick. Two common types of advance directives are:
- A living will gives you a say in your health care if you become too sick to make your wishes known. In a living will, you can state what kind of care you do or don’t want. This can make it easier for family members to make tough healthcare decisions for you.
- A durable power of attorney for health care lets you name the person you want to make medical decisions for you if you can’t make them yourself. Make sure the person you name is willing to make those decisions for you.
For legal matters, there are ways to give someone you trust the power to act in your place.
- A general power of attorney lets you give someone else the authority to act on your behalf, but this power will end if you are unable to make your own decisions.
- A durable power of attorney allows you to name someone to act on your behalf for any legal task, but it stays in place if you become unable to make your own decisions.
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.
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Planning For End Of Life Care
When a person with dementia is approaching the end of their life, it can be a very difficult time for them and the people around them. However there are things you can do to support the person and other close family or friends.
Around this time you will probably be dealing with a range of different health and social care professionals. It will really help if there is good communication between all of the people involved in providing the persons end of life care.
Can Dementia Be Cured
There is no cure for dementia.5 However, research has shown that there are ways to delay the onset or progression of dementia. By making adjustments to your daily routine, people can help improve and maintain a healthy brain. These changes include eating a healthy diet, remaining active and moving more, and socializing with friends and family. Check out US Against Alzheimers Brain Guide for more tips.
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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.
What Is ‘end Of Life Care’
End of life care aims to support a person in the later stages of a life-limiting condition to live as well as possible until they die.
It aims to enable the person to die in the way that they would have wanted, giving priority to the things that matter most to them. It also supports family and carers during the final stages, as well as after the person has died.
End of life care can last for just a few days or weeks, but for many people it may continue for months or even years.
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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.
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.
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Palliative And End Of Life Care
Palliative care aims to give people reaching the end of their life the best quality care which meets their physical, emotional, spiritual and social needs. Someone can receive palliative care for several years and it may be offered alongside other treatments, especially in the earlier stages of dementia. Any palliative care in place will continue alongside end of life care.
End of life care aims to support someone in the later stages of a life-limiting condition to live as well as possible until they die. At this point, treatment focuses on relieving symptoms . It also aims to support family and carers during this time and after the person dies.
The length of time the person may experience in the end stage of the illness can still be many years. People with dementia differ in the speed with which their abilities deteriorate, therefore it is impossible to determine how long end of life care will continue.
End of life symptoms include:
- Severe fragmented memory
- No independent function
- A need for help with personal care and continence management.
Later still, the person may enter a stage of total dependence and inactivity where he/she may have difficulty eating and walking, may fail to recognise relatives, friends and familiar objects, have difficulty understanding and interpreting events, may suffer bladder and bowel incontinence, and be confined to a wheelchair or bed. The latter can make the person especially vulnerable to infections such as pneumonia, which can be fatal.
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.
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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 .
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:
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For Families Speaking To Patients
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 loved one 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
Ask permission. Asking permission to discuss a difficult topic assures your loved one that you will respect his or her wishes and honor them. Say something like, I would like to talk about how we can continue to ensure you get the very best care and attention as your condition progresses. Is that okay?
Determine what is important to your loved one. Ask him or her to consider the future: What are you hoping for in the coming months, weeks or days? What are you most concerned about? The patient might express a desire to be comfortable, to stay at home or to not become a burden.
Discuss hospice care as a means of fulfilling the patients wishes. Now that your loved one has told you what is important to him or her, explain that hospice is a way of making sure wishes and desires are met. For some, the word hospice evokes a false notion of giving up. Explain that hospice is not about surrendering to disease or death. It is about bringing quality of life to the patients remaining months, weeks or days.
Why Are So Many More People Dying With And From Dementia
A hundred years ago, people died from influenzia, pneumonia, strokes and diarrhea. Diseases that no longer make the top 10 leading causes of death.6 As we have discovered cures for these and many other diseases, life expectancy has increased, and more people are dying with and from dementia.
In short, through medicine, we can prolong the body, but not the mind. Furthermore, instead of treating dementia like the terminal illness that it is, medical advances are extending the length of a time a person lives with advanced dementia. Consider these facts from three different studies:
- In the last month of life, 57% of nursing home residents with advanced dementia had at least one emergency department visit. Of those, close to half were admitted to the hospital.7
- In their last 3 months of life, 41% of people with dementia underwent at least one burdensome intervention, such as hospitalization, emergency room visit or tube feeding.8
- 42% of dementia patients in nursing homes were on antibiotic therapy during the last two weeks of their lives.9
Such tests and treatments may place people with advanced dementia in situations that go against the best evidenced-based practices in dementia care, such as keeping a person in a familiar environment, establishing routines and ensuring circadian rhythms are maintained.10
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