Taking Care of Alzheimer’s Late Stages Patient

In the later phases of Alzheimer’s disease (AD), it becomes evident that in spite of the best care, attention, and treatment, your loved one is approaching the end of life. At this stage, a patient can no longer communicate directly, is totally dependent for all personal care, and is generally confined to bed. Unable to recognize once cherished people and objects, or to verbally express basic requirements, the person with Alzheimer’s completely depends on sensitive caregivers to advocate, connect, and attend to her needs.

Many caregivers finally acknowledge their own needs for significant help. This period may last from a matter of months to three years, and calls for revised strategies, tough decisions, and an expanded team. Understanding and anticipating these changes provides a framework from which to proceed.

Advanced illnesses, physical safety needs, and the 24-hour demands of final stage caring often prompt additional in-home interventions or out-of-home placement. Although many caregivers want to keep their loved ones at home, this requires stamina, space, and considerable support from others.

Although there are no right or wrong answers, multiple changes can be especially difficult for a patient with advanced dementia. Adjustment to placement is easier before the end stage. Care and placement decisions should reflect the patient’s current needs, plans for her eventual death, and the caregiver’s health, financial, and emotional needs.

When patients with Alzheimer’s disease (AD) reach the final stages, their caregivers have grieved physical, cognitive, and behavioral regression for years. Many struggle to make difficult treatment, placement, and intervention choices through a prism of continuous and profound loss. As your loved one’s serious decline becomes more evident, the skills and understanding cultured during caregiving can keep you engaged and committed.

Late Stage Symptoms

The late stage of Alzheimer's may last anywhere from several weeks to several years. Intensive, around-the-clock assistance is usually required. Caring for the person with Alzheimer's disease is most successful when the focus is on preserving quality of life and dignity and treating the person with compassion and respect.

In the last stage of Alzheimer's disease, a person usually:

• Little to No Memory: Short- and long-term memory is severely impaired.
• No recognition of family or friends. The person may not recognize him or herself in the mirror. They may think that their spouse is a stranger or the person in the mirror is a stranger.
• Great Difficulty Communicating With Others: The person may be unable to speak or understand words.
• Difficulty Remembering How to Eat: The person may have difficulty coordinating the steps of biting, chewing, swallowing, etc. Despite good nutrition and meal supplements, typically there is weight loss.
• Difficulty with Coordinated Movements: The person may walk unsteadily. Fumble when grasping objects, to be unable to hold onto objects. Needs assistance walking and eventually becomes bed-ridden or chair-bound.
• Increased Frailty: Muscles may weaken and people are susceptible to infections, pneumonia, and other physical illnesses.
• Loss of Bowel and/or Bladder Control.
• Upset Sleep Cycle: The person may be able to sleep only with the help of sleep medications.
• Needs full-time help with personal care, activities, or interactions, including toileting.

General Recommendations

End stage changes are often more difficult for family members than patients. Intricate and highly personal decisions can shift focus from comfort and dignity to unresolved personal or relationship issues. Following are tips for making patient-centered determinations in this last period of life:

• Prepare early as possible for the inevitable outcomes. The AD journey is eased considerably when placement, treatment, and end-of-life conversations are held in the first stages. Consider using the Five Wishes process to guide and formalize your discussion. Seek financial and legal advice while your loved one can participate. Consider hospice services, spiritual practices, and memorial traditions before they are needed. When caretakers simply implement their loved ones’ preferences, they are free to emphasize care and compassion.
• If your loved one did not prepare a living will or advanced directives while competent to do so, act on what you know or feel his wishes are. Make a list of conversations and events that illustrate his views. To the extent possible, consider treatment, placement, and decisions about dying from his vantage point.
• Family members vary in their capacities for emotional openness and expression. When stress and grief are heightened by a loved one’s deterioration and withdrawal, conflict may result. If you are unable to agree on living arrangements, medical treatment, or end-of-life directives, ask a trained doctor, social worker, or hospice specialist for mediation assistance. Prolonged disagreement can impact your ability to grieve and hamper your well-being.
• Choosing a primary decision maker and a communicator to manage information facilitates family involvement and support. Even when families know their loved one’s wishes, implementing decisions for or against sustaining or life-prolonging treatments requires communication and coordination.

• If children are involved, make efforts to include them. Children need honest, developmentally appropriate information about your loved one’s condition and any changes they perceive in you. They can be deeply affected by situations they don’t understand, and may benefit from drawing pictures or using puppets to simulate feelings, and hearing stories that explain events in terms they can grasp.
• Insuring a loved one’s final years, months, or days are as good as they can be is not just a series of resource and care choices. Learning to live through grief, celebrate your accomplishments, and honor your loved one’s life will shape your emotions and determine your tasks.
• Passage through the final stage of Alzheimer’s disease is affected by several factors: economics, family and friends, care options, and caregiver resilience. Ideally, the patient’s pain is well controlled, interactions acknowledge her remaining emotional presence, caregivers and other family members are supported, and there is time for a calm, peaceful goodbye. Your tasks may include the following actions.

Partnering to manage pain

Even in the last stages, patients with Alzheimer’s disease communicate discomfort and pain. Pain and suffering cannot be totally eliminated, but you can help make them tolerable.

Managing pain and discomfort requires daily monitoring and reassessment of subtle nonverbal signals. Especially when a dramatic decline in functioning occurs, families may choose to discontinue other medical interventions and focus on palliative care for the pain and symptoms associated with dying. With adequate help, this care can be provided at home.

Subtle, behavioral changes can signal unmet needs. Communicating written observations, times, and events to your medical team will provide valuable clues about your loved one’s pain status. The soothing properties of touch, massage, music, fragrance, and a loving voice can also reduce pain. Be open to trying different approaches and observe your loved one’s reactions.

Connecting and loving

Sharing human kindness through the final stages of Alzheimer’s disease takes many forms. Even when patients cannot speak or smile, their emotional memories remain.

Staying calm and attentive will create a soothing atmosphere and communicating through sensory experiences such as touch or singing can be reassuring to your loved one. Contacts with pets or trained therapy animals bring pleasure and ease transitions for even the most frail. Surrounding a loved one with pictures and mementos, reading aloud from treasured books, playing music, giving long, gentle strokes, reminiscing, and recalling life stories promote dignity and comfort all the way through life’s final moments.

Caring for yourself

As impossible as it may seem, taking care of yourself during your loved one’s final stages is critically important. Research shows spousal caregivers are more likely to experience despair while adult children find fulfillment through their caregiving roles. In any case, it is important to learn how to adjust, feel whole again, and move on.

Ironically, the extended Alzheimer’s journey gives families the gift of preparing for, and finding meaning in their loved one’s end of life. When death is slow and gradual, many caregivers are able to prepare for its intangible aspects, and to support their loved ones through the unknown. Even with years of grief, others find themselves unprepared and surprised when death is imminent.

Talking with family and friends, consulting hospice services, bereavement experts, and spiritual advisors can help you work through these feelings and focus on your loved one. Palliative care specialists and trained volunteers assist not only on the dying person, but also caregivers and family members.

From the moment of a loved one’s Alzheimer’s diagnosis, a caregiver’s life is never the same. It can, however, be happy, fulfilling, and healthy again. Replacing lost relationships, using your experience to help others, and gaining new perspective will help your return to normalcy.

Can you take care of the person with Alzheimer’s disease at home?

At some point you may need to re-evaluate your approach if you want to keep your family member at home, or it will be the best for everyone to consider the special accommodation. Definitely, economic reasons come in action, since long-term care for Alzheimer’s might be very expensive, you might not be able to comply with the required monetary obligations.

• Is qualified, dependable support available to insure 24 hour care?
• Will your home accommodate a hospital bed, wheelchair, and bedside commode?
• Are transportation services available to meet daily needs and emergencies?
• Is professional medical help accessible for routine and emergency care?
• Are you able to lift, turn, and move your loved one?
• Can you meet your other responsibilities and your loved one’s needs?
• Are you emotionally prepared to care for your bed-ridden loved one?

Sources and Additional Information:

http://www.seniorservicehub.com/late-stage-and-end-life-alzheimers-care

http://www.helpguide.org/elder/alzheimers_disease_dementia_caring_final_stage.htm

http://www.intergens.com/featurearticle-26.html

http://www.ec-online.net/knowledge/Articles/latealz.html

Modifying Your Home Environment to Accommodate Alzheimer's Patient

What does it mean to modify the home environment?

Research studies and anecdotal experience suggest that factors in the physical environment, such as lighting, color or noise, can greatly impact the behavior of a person with Alzheimer's. Making changes and adjustments to the home environment can help make day-to-day activities easier and safer for the person with Alzheimer's and can reduce specific symptoms, such as wandering.

At first, changes may need only be simple adjustments, such as keeping often-used items in a certain place, labeling doors or drawers so the person can find things easily, or using notes and timers to remind the person to do certain things. As the disease progresses, more extensive measures may be necessary to ensure the person's safety and help reduce problematic behaviors.

How can modifying the home help the person with Alzheimer's?

People who have Alzheimer's may eventually lose access to what has been called the "map room" of the brain, the systems that orient us in time and space. Wandering and losing one's way to or from destinations - even within one's own home - may result. One of the goals of so-called "environmental modification" is to help people with the disease overcome the loss of these internal mapping abilities.

A great deal of clinical experience and research has demonstrated that when the physical environments of people with Alzheimer's are specially designed to support their abilities, they are able to remain more independent and socially engaged, have fewer paranoid delusions and aggressive outbreaks, and be less anxious. Home modifications can also jog short-term memories and help the person with Alzheimer's access long-term memories. Perhaps most importantly, by making the environment more "Alzheimer's-friendly," the person can live more safely and dependence on others for daily activities may be delayed for as long as possible.

What types of modifications are beneficial?

There is little question that environmental modifications improve day-to-day functioning in people who have Alzheimer's disease. Researchers are still investigating which modifications are most beneficial and how things like lighting, music and furniture placement might interact to affect behavior. A number of specific home modifications have been shown to be beneficial in reducing certain problematic behaviors in people with Alzheimer's:

• low levels of light during meals (this may improve eating habits);
• simply furnished spaces with minimal distractive clutter;
• consistent background noise, especially music of the person's choosing or simulated nature sounds;
• placing objects that cue memories in clear view, such as photographs, mementoes and familiar furniture;
• ensuring privacy and personalizing space - especially if the afflicted person spends time or resides in a healthcare facility outside of the home.

What can be done to make the home safer for the person with Alzheimer's?

The types of safety precautions that may be necessary depend upon the stage of illness and the types of symptoms the person is encountering. In early stages, precautions might include using appliances that shut off automatically, setting timers or alarms to remind one that something is cooking or that it's time to take medicine, and using notes and lists to organize activities and minimize missed appointments.

Meal preparation may pose a risk to the person with Alzheimer's as the disease progresses. The person may not recognize when a stove is on, or if food is too hot to eat. Gas appliances should be checked to be sure pilot lights are working properly, as a gas leak might go unnoticed. The home should be equipped with smoke detectors and fire extinguishers marked with clear instructions in each room of the house.

In later stages, it may also be prudent to remove guns, knives and other potentially dangerous implements from access by the afflicted person. Toxic or poisonous items, such as cleaning solutions, bleach, drain opener and prescription medicines, should be kept in a safe place to prevent accidental ingestion.

At what point should a person with Alzheimer's not be allowed to drive?

It may come as no surprise that there is substantial scientific evidence that people with Alzheimer's disease pose a significant traffic-safety problem, both from accidents and from impaired driving performance. The American Academy of Neurology, a professional organization for physicians who specialize in brain disorders, has issued guidelines for physicians regarding the risk of driving by people with Alzheimer's. Your doctor should be able to guide and counsel you on this matter.

Making the decision that it is no longer safe for a person with Alzheimer's to drive is difficult, and the decision needs to be communicated carefully and sensitively. The person may understandably be upset by the loss of independence and the need to rely on others for going places, especially in areas where public transportation is limited or nonexistent. Nevertheless, safety must be the first priority. Here are some suggestions from the National Institute on Aging:

• Look for clues that safe driving is no longer possible, including getting lost in familiar places, driving too fast or too slow, disregarding traffic signs, or getting angry or confused.
• Be sensitive to the person's feelings about losing the ability to drive, but be firm in your request that he or she no longer do so. Be consistent - don't allow the person to drive on "good days" but forbid it on "bad days."
• Ask the doctor to help. The person may view the doctor as an "authority" and be willing to stop driving if the doctor recommends it. The doctor can also contact the Department of Motor Vehicles and request that the person be re-evaluated for driving ability.
• If necessary, take the car keys. If just having keys is important to the person, substitute a different set of keys.
• If all else fails, disable the car or move it to a location where the person cannot see it or gain access to it.

How can wandering be managed?

Wandering can be a major safety risk for people with Alzheimer's disease. If wandering is a problem, it may be necessary to install alarms or locks on doors. There are various programs available that provide identity bracelets for people with Alzheimer's, so that if they do wander from home or work, they may be returned safely. Another option is to accompany the person on a walk in the neighborhood or a park. Some researchers are experimenting with "supervised wandering" that enables patients with Alzheimer's to wander and pace in safe enclosed spaces, and the results are encouraging. In some cases, it may be necessary to have someone stay with the person 24 hours a day to prevent him or her from wandering off and becoming endangered.

Where can I learn more about home modifications?

Patient groups for people with Alzheimer's and caregiver support groups can be excellent sources of information about modifying the home and other ways to help manage the behavioral symptoms of a person with Alzheimer's. Your doctor, counselor, social worker or geriatric care manager should be able to help you find more information.

What can be done to help manage incontinence?

As the disease progresses, many people with Alzheimer's begin to experience incontinence, which is the inability to control one's bladder and/or bowel movements. Incontinence can be upsetting to the person and difficult for the caregiver. In later stages of the disease, the person may not even be aware that he or she is incontinent. Sometimes it may be due to a physical illness or to medications the person may be taking, so be sure to discuss it with the person's doctor. Here are some tips from the National Institute on Aging that may help manage this issue:

• Have a routine for taking the person to the bathroom, and stick to it as closely as possible. For example, take the person to the bathroom every three hours or so during the day. Don't wait for the person to ask.
• Watch for signs that the person may have to go to the bathroom, such as restlessness or pulling at clothes. Respond quickly.
• Be understanding when accidents occur. Stay calm and reassure the person if he or she is upset. Try to keep track of when accidents happen to help plan ways to avoid them.
• To help prevent nighttime accidents, limit certain types of fluids, such as those with caffeine, in the evening.
• If you are going out with the person, plan ahead. Know where restrooms are located and have the person wear simple, easy-to-remove clothing. Take an extra set of clothing along in case of an accident.

Sources and Additional Information:

http://www.alzinfo.org/alzheimers-treatment-modifying.asp

http://www.ec-online.net/knowledge/articles/homemodify.html

http://www.alzinfo.org/hometips.asp

Alzheimer’s Caregiving Basics

To become an effective Alzheimer's caregiver, it is important to gather as much information as possible about the disease. Start by reading every possible article on Alzheimer's, talk to physicians, learn about medication, and contact the Alzheimer's foundation for informational brochures. Alzheimer's support groups are also a good source of ideas and information. An adult day-care center may also help, allowing a few hours a week of structured activity for the patient. Taking on the role of helping a brain disease sufferer is a difficult task, but there are organizations to turn to for support.

In many families, one member is often the primary Alzheimer’s caregiver, but what happens if that family member is unprepared? If you are that person, then the best thing you can do is to arm yourself with information about Alzheimer’s disease. Here are some helpful tips you can use to become an effective Alzheimer’s caregiver.

Research, Research, Research!

Talk to the patient’s physician and ask all the questions you have about the symptoms, possible medical treatments, and other alternatives. Request that the doctor provide you a list of related literature and other informational materials on Alzheimer’s disease.

Conduct in-depth research into your community’s medical facilities, from the expertise of the physicians to the medical equipment used. Keep this information, addresses, and telephone numbers within reach at all times.

Get in touch with the following organizations: the Alzheimer's Disease Education and Referral Center (ADEAR) and Alzheimer's Association for starters. Ask them if they provide training on care giving and other management skills to help you become an effective Alzheimer’s caregiver.

Join a support group. You will find the addresses and contact details of these support groups at churches, synagogues, seniors’ centers, and assisted living facilities. They will help provide the emotional support you need, as well as concrete ideas on how to be a better Alzheimer’s caregiver.

Schedule Is the Key

Create a flexible routine for you and your patient, and you can maximize the times that are best for the person with Alzheimer’s disease. Be kind to yourself, and remember that no matter how hard you try as an Alzheimer’s caregiver, there will be days when nothing goes right for the patient.

Add variety to your patient’s schedule by creating a variety of activities. Perhaps you can use the services of an adult day-care center once a week. This will provide the patient opportunities to socialize and allow you to be a better Alzheimer’s caregiver by providing the breathing space you need. Also, plan your doctors’ visit when it is least crowded and the patient is receptive.

Think Ahead

Inspect the house and make it accident-proof. You can install locks so that the person with Alzheimer’s disease will not wander out, and be sure to hide any sharp objects that could hurt the patient. Remember to label all the medicines, and keep them locked away.

Being an Alzheimer’s caregiver is never going to be easy. The person you are caring for is suffering from an irreversible brain disorder; however, some of the basics outlined here can help you as you maintain a quality of life for both yourself and the person with Alzheimer’s.

Basic Tips

Establishing daily routines

A clear routine can decrease confusing decisions for people with Alzheimer's disease (AD). Bringing order to an increasingly chaotic life represents security for anyone feeling confused and disorientated. So, "It's 11.15 - coffee time!" is preferable to, "What would you like to do now?"

Maintaining dignity

The individual needs to contribute to conversations and decisions, and it is best for others never to talk about the person as if he or she is not present, as this can cause feelings of humiliation.

Reinforcing independence

Independence will create self-respect and minimize additional work for caregivers. If others help with an activity, for example, dressing, the helper can start the activity and then allow the individual with AD to complete the task. This will give a sense of achievement.

Separating the person from Alzheimer's disease

Many people become infuriated when the person with AD displays challenging behavior. It is helpful to blame the disease, not the person.

Staying Positive

Conflict causes stress to the caregiver and the person with dementia. It is helpful to avoid focusing on failure, and instead, to highlight any success, or near-success. Becoming upset makes the situation worse.

Sometimes, distraction can solve problems. If the person insists that there is a man in a black cloak nearby, insisting on the truth will cause humiliation. Instead, it can be acknowledged that he or she is seeing the man, but asserted that only the individual can see him – then another subject can be raised. Report hallucinations to a doctor.

Keeping tasks simple

This is achieved by making sure that the individual retains the making of choices - but limiting the choices to avoid confusion. So - instead of saying, "What will you wear today?", the question could be, "Will you wear your blue dress or your green dress today?"

Laughing

Humor can help to relieve stress. If the person is able to laugh at mistakes, this can lighten difficult situations. If caregivers laugh with the person, not at him or her, that can be even better. Other opportunities exist for laughter too - the antics of a pet or a child, a TV program…

Keeping safe

Safety is a high priority. Fire, electricity, water, obstacles and staircases can cause special concern. Information is available from the local support group, fire authorities, electricians etc. on making the home a safer place.

Remaining healthy

It is important to help maintain physical and mental abilities at the highest possible level. The doctor can advise. A healthy diet will benefit the individual. Memory loss for recent events can sometimes mean that the person may eat two meals instead of one - or have too many unhealthy snacks. Keeping to a firm meal routine is helpful.

Try to include some activities that challenge the person's thought processes (perhaps, a daily word puzzle).

Celebrating a person's existing abilities

It is advisable to focus on strengths instead of weaknesses. Some skills can be retained and enjoyed eg. crafts, singing, gardening etc.

Keep communicating

• People need to show warmth and affection.
• The person with AD may express needs through actions.
• Eyesight and hearing should be checked and maintained.
• Others should be aware of their own body language, especially when feeling impatient or cross.

Use aids to help memory

Displaying large clear pictures of relatives and friends can be helpful. So can writing notes on a calendar. Doors may be labeled with words and bright distinctive colors. Keeping things neat and well organized also helps memory.

Sources and Additional Information:
http://www.alzheimerscaregiverresource.com/

http://www.nia.nih.gov/Alzheimers/Publications/resourcelist.htm

http://www.distance-education.org/Articles/Online-Resources-for-Caregivers-of-Alzheimer-s-Patients-247.html