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

Limitations for Advance Care Planning for Alzheimer’s Patient

AHRQ Study for Advance Care Planning

Agency of Healthcare Research and Quality (AHRQ) performed a detailed research on the current state of the effectiveness of the Advance Care Planning for the patients with chronic illnesses. The research finding indicates that most patients have not participated in advance care planning, yet many are willing to discuss end-of-life care. One way to determine patients' preferences for end-of-life care is to discuss hypothetical situations and find out their opinions on certain treatment patterns. These opinions can help clarify and predict the preferences they would be likely to have it if they should become incapacitated and unable to make their own decisions.

Studies funded by AHRQ indicate that many patients have not participated in effective advance care planning. The Patient Self-Determination Act guarantees patients the right to accept or refuse treatment and to complete advance medical directives. However, despite patients' rights to determine their future care, AHRQ research reveals that:

• Less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record.
• Only 12 percent of patients with an advance directive had received input from their physician in its development.
• Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.
• Having an advance directive did not increase documentation in the medical chart regarding patient preferences.
• Advance directives helped make end-of-life decisions in less than half of the cases where a directive existed.
• Advance directives usually were not applicable until the patient became incapacitated and "absolutely, hopelessly ill."
• Providers and patient surrogates had difficulty knowing when to stop treatment and often waited until the patient had crossed a threshold over to actively dying before the advance directive was invoked.
• Language in advance directives was usually too nonspecific and general to provide clear instruction.
• Surrogates named in the advance directive often were not present to make decisions or were too emotionally overwrought to offer guidance.
• Physicians were only about 65 percent accurate in predicting patient preferences and tended to make errors of undertreatment, even after reviewing the patient's advance directive.
• Surrogates who were family members tended to make prediction errors of overtreatment, even if they had reviewed or discussed the advance directive with the patient or assisted in its development.

Why Advance Care Planning is Needed?

Advance care planning describes a patient expressing how other people should manage future medical problems when the patient is no longer able to make decisions about his or her care. A patient can document these plans as witnessed legal documents. Such a document is called a living will.  It describes the kinds of treatments the person would or would not want to receive.  A durable power of attorney  for health  care describes  the  person  who  should  serve as  surrogate  and  speak  on  behalf  of  the  patient. Alternatively, a patient can choose not to execute these legal documents but instead have informal guides for care that are kept in a chart note or remembered conversation.

In  general,  the  process  of  advance  care  planning benefits  patients:  decreasing  depression,  enhancing  a sense of being in control and settling treatment preferences.   It  may  be  particularly  useful  in  the  case  of patients  who  are  at  risk  of  problems  with  surrogate decision-making.   Specifically,   the   patient   may   be estranged from their spouse, though not divorced, and living with a partner.  Or  the  patient  may  not  have  a partner but several children who are not in close contact  with  each  other.  There  are,  of  course,  multiple permutations  upon  these  kinds  of  family  situations.

Advance Care Planning Limitations

The  general  point  is  that  they  present  the  risk  that there  may  be  disagreements  among  people  over  who has the authority to speak on behalf of the person and what is the proper way to care for them. A useful strategy  to  avoid  such  a  situation  is  to  ask  a  patient ‘Suppose your Alzheimer’s disease gets worse so that you can’t talk with me the way you are right now and instead I have to talk with someone else about how to take care of  you. Who should I talk to? Who do you trust? Is there anyone in the family I should not talk to?’ However, as potentially valuable as advance care planning is, clinicians need to address three limitations to assure that advance care plans create an understanding and appreciation of the patient’s future, and identify values that should help to shape that future.  The first limitation is the nature of the specificity of the directive.  Living  wills  may  seem  to  assure  the strictest  adherence  to  a  patient’s  self-determination, for example, ‘I do not want a feeding tube’. However, a  directive  applies  to  specific  conditions,  the  most common  of  which  is  the  condition  of  a  terminal  illness.  In other words, the directive to withhold an enteral feeding tube would only apply in the event the person is not competent and also in a terminal state.

Such conditions limit the scope of the directive. And yet,  the  future  health  states  that  typically  motivate people to make a living will are cases of a persistent vegetative state or severe dementia, both of which do not clearly describe a person who is terminal and may in fact live for at least a year or more. A clinician can address this limitation by fostering advance care planning  conversations  that  focus  on  the  patient’s  goals, values and personal concepts of best interests, and are amended  to  include  conditions  such  as  persistent vegetative state or severe dementia.

A second limitation of advance directives is that many people do not see them as a means to determine precisely the course of future events. Specifically, people  may  not  want  to  make  specific  plans  for  their future care in the same manner that they use a will to instruct  people  to  manage  their  property.  Instead, people may use an advance directive to entrust others to act in their best interests. Whereas a will for property typically states instructions such as ‘My sister gets the car and my son gets the boat’, a person may not want their living will to have the same degree of specificity.  Instead  of  stating  the  decision  specific  ‘In  the event I have severe stage dementia, I do not want an enteral feeding tube’, their directive would state ‘In the event  I  have  severe  stage  dementia,  I  leave  it  to  my trusted  husband  to  decide  whether  I  should  have  an enteral feeding tube’. The clinician or whoever is helping the person complete their advance care plan then needs  to  ask  the  person  what  kinds  of  factors  the trusted husband should or should not think about.

To  guide  this  discussion  of   factors,  a  clinician should assess how much freedom or leeway a person would  grant  their  trusted  proxy  over  their  advance care  preferences  and  if  they  would  grant  them  freedom,  what  factors  should  guide  it.  For  example,  a patient  may  say  ‘If  I  reach  the  point  where  I  cannot recognize my family, then I don’t want to be kept alive. If I get pneumonia or something, let me go. Period’. A useful probe to this statement is how much leeway or freedom the patient would give to their proxy over this decision to do the opposite.  For  example,  this  same patient may say ‘Well, if  I’m happy and laughing and enjoying life, it’s worth taking some chances, but that’s really  the  key  –  how  much  I  am  enjoying  life’.  This example illustrates how the person modified their initial strong preference against treatment under certain clinical circumstances to include factors that their proxy should take into consideration.

A  third  limitation  is  that  a  dementia  patient’s impairments   in   abstract   reasoning,   planning   and insight  may  hinder  their  decision-making  abilities  to the  degree  that  they  lack  the  capacity  to  execute  an advance directive.  A useful strategy for the clinician is to present a patient with a description of a person in the profound stage of dementia and asks the patient ‘Suppose that you were in this condition. How would you want to be cared for?’  The patient’s answer is then  a  starting  point  both  to  assess  their  ability  to make  decisions  about  their  future  care  and  for  a discussion about their goals and values of care.

Sources and Additional Information:

http://www.ahrq.gov/research/endliferia/endria.htm

Clinical Diagnosis and Management for Alzheimer’s Disease by Serge Gautheir

http://depts.washington.edu/bioethx/topics/adcare.html

http://www.caringinfo.org/PlanningAhead/AdvanceCarePlanning.htm