Office of Parish Outreach Ministries/Health Care Ministry

Ministering to Persons with Alzheimer's Disease and Related Disorders

Introduction: "What good do my visits do?"  This question surfaces time and again when reaching out to persons with Alzheimer's disease.  Providing appropriate and effective pastoral care services to those who suffer from dementing illnesses may seem an insurmountable challenge.  However, having a rudimentary knowledge of the physiology of dementia and its resulting behaviors will enable the pastoral visitor to enter into the experience of the cognitively impaired individual. The visitor will be able to understand what function has been lost and how the person's world has been forever altered.  One will discover what capacities remain intact and how to maximize them.  This basic knowledge  offers a pathway into the strange yet accessible reality of the Alzheimer's patient.  Finding common ground, the caregiver will be able to relate in a substantive, effective and satisfying way to those who suffer from memory problems.  The answer to the question, "What good do my visits do?", will become apparent as we help those who are cognitively impaired to experience their intrinsic dignity and lovability.

An Alzheimer's Primer

What are Alzheimer's disease and dementia?

Alzheimer's disease is a progressive degenerative disease of the brain that results in dementia.  Dementia itself is not a specific disease, but a constellation of symptoms involving a loss of memory, an impairment in judgment and the development of progressive confusion. It is not a form of mental illness,  although persons with early dementia worry greatly about what is happening to their minds. Dementia is most often caused by actual damage to brain cells.

There are over 60 illnesses, including Parkinson's disease and Huntington's disease, that have dementia associated with their course.  Alzheimer's is the most common, accounting for up to 75% of all dementias.

If we comprehend the dynamics of Alzheimer's disease, we will have an understanding for the devastating changes wrought by any type of dementing illness and a feel for how to respond to those afflicted.

What is the scope of the disease?

Approximately four million Americans have Alzheimer's disease (AD). The risk of developing it increases over time.  It is estimated that  one in ten people over age 65 and almost half (47%) of those over 85 suffer from AD.  As the U.S. population ages, the number of people affected by Alzheimer's disease is expected to explode.  Without a cure, 14 million Americans will develop AD by the middle of the century.  Their 65 million family members will have to cope with the devastating impact of the disease upon their loved ones.

Alzheimer's disease is progressive and ultimately fatal.  It is the fourth leading cause of death among the elderly.  Persons with AD live an average of eight years after the onset of symptoms, although they may live as many as twenty. Half of all nursing home patients have AD or another dementing illness.

What happens in Alzheimer's disease?

In Alzheimer's disease, there is a loss of brain cells (neurons) and specific brain chemicals (neurotransmitters) needed for normal cognition.  Lesions, known as senile plaques and neurofibrillary tangles, choke the brain cells that remain. Clearly, the brain is assaulted.  Due to this brain damage, the Alzheimer's patient cannot control the troubling changes in his or her functioning. 

What is gone?

Alzheimer's disease affects the area of the brain known as the temporal lobe which is considered to be the memory center of the brain.  Specifically, the hippocampus, the area involved in short term memory, is often targeted and damaged.  Short term memory is essential in the processing of new information. It serves as the bridge between immediate memory (the information that is before a person in the moment) and long term memory (the information that is stored indefinitely for retrieval at will). This deficit in short term memory makes learning any new information nearly  impossible.  Thoughts, sensations and interactions fall away and cannot be retrieved .

This short term memory deficit explains why, for instance, Alzheimer's patients can remember what they ate at their high school prom but cannot remember what they had for lunch.  It also explains why people with AD tend to become house-bound and isolated.  The map and routine of home are safely held by long term memory, while the faces, sights and sounds of new environments arise and dissolve in the confusion of immediate memory. 

Usually, symptoms first develop gradually in people with AD.  In time, however, subtle lapses in memory, like forgetting daily appointments, give way to more profound deficits in memory and cognition.  Eventually, language use and comprehension deteriorate dramatically.  As the disease advances, people lose the ability to perform basic tasks (e.g., arithmetic), to follow directions and to complete activities of daily living. Most other areas of the cerebral function, the seat of reasoning, planning and judging, are affected and these capacities eventually are lost.  Issues of safety arise because motor function initially remains preserved despite profound cognitive deficits. Eventually, motor function can also be affected. 

The illness does not follow a set pattern or a set time course and sufferers may show different deficits at different paces.  However, three stages of Alzheimer's are generally identified: early, middle and late, each of which has its own profile and may span several years.  While the exact level of loss and resulting need can vary a great deal among AD patients, the general information presented in these Notes is applicable to virtually all.

What remains?                                  

While cognitive function is devastated, the centers of emotion in the brain remain largely unaffected until late in the disease.  This is the "good news" about Alzheimer's disease: the capacity to feel and to relate on the emotional level remains intact and can be used to activate a vibrant, engaged quality of life.  Here is where the potential for mutually fulfilling interaction can be found.

What is the impact on the patient and the caregiver?

Some people afflicted with AD do not recognize their deficits.  Others do have insight and, in the early stages of the disease, can experience anxiety, fear, frustration, a sense of loss and embarrassment.  Later, they may display agitation and anger or passivity.

Caregivers' well-being, stress level, mental and physical health can be negatively impacted by the caregiving experience.  Needs of the Alzheimer's person can cause caregivers to give up activities and become isolated.  Role changes frequently occur.  Church attendance may be decreased or cease.  It is important for parish communities to be mindful of the needs of family caregivers for spiritual and emotional assistance.

In caring for the caregiver, however, it is important not to change focus or  neglect the person with Alzheimer's.  This is a potential risk because of the communication challenges that dementia causes.  Visits have great value.  While the short term memory loss may not allow him or her to remember who came to visit or what happened, the happy feelings that were shared will remain throughout the day.

Relating fruitfully to the person with Alzheimer's disease.

In any relationship, developing empathy -  the capacity to understand and accept what the other person is experiencing - helps to engender a sense of connection and trust. Entering into the other's perspective enhances communication and fosters effective relationships. This is particularly true in dealing with Alzheimer's patients.  Suffering from irreversible brain damage, they can no longer adjust their behavior to the external environment, including the needs and desires of the people in their lives.  Rather, it is we who must adapt our behavior and their environment to the new reality being experienced by Alzheimer's patients.

A basic understanding of the nature of dementia and the following communication tips can help you to reach the essential person behind the memory loss.  This approach makes the most of what remains - emotional functioning - while minimizing expectations for interaction on the cognitive level.

What helps?

· Approach the Alzheimer's patient from the front, conveying warmth and acceptance via eye contact, smiles and relaxed body language.  Remember, you are the one to set the mood!

. Identify who you are (repeatedly, if needed. Speak  slowly, clearly, in short sentences.  Use a calm and gentle voice.  Give one direction at a time. Offering sincere compliments goes a long way toward engendering positive feelings.

· Treat the person with dignity and respect.  Be patient.  Don't rush the person.  Focus on feelings rather than facts.

· Engage the Alzheimer's patient in conversation that centers on the present moment (e.g.,"Would you like a drink?"\;  "It's sunny today."). This focuses on  functioning immediate memory.  Or you can help persons to access long term memory by encouraging reminiscence about younger years.  Encourage the person to elaborate on your specific statements rather than ask general questions (e.g., "You worked for the railroad, didn't you?", rather than, "What did you do for work?").

· If the patient engages in problematic behavior, remain calm, validate his or her feelings and offer helpful alternatives.  For example, if someone is calling for his or her deceased mother, you might say, "I can tell you love your mother very much.  Tell me about her." Or you might say, " Sometimes I feel lonely and want my mother, too. I'd be happy to sit with you awhile."

· If a person repeats the same question over and over, it does no harm.  Respond with as much patience and  presence as you can.  Remember, the process of connecting and reinforcing positive emotions is the goal, not the content of a stimulating "meeting of the minds".

· If you upset someone, simply say, "I'm sorry" and try something else.  Each moment is brand new!

What does not help?

· Trying to teach Alzheimer's patients new strategies to deal with their decline (e.g.,   micro-waving frozen dinners when no longer able to cook). The illness has robbed them of  their capacity to learn.

· Playing "Twenty Questions" in an attempt to jar memory (e.g., "Do you know who I am?"  "What did you have for lunch?").  Emotionally, the person will feel the shame of being unable to answer correctly.

· Attempting to argue/reason with the Alzheimer's patient. It will not be a successful strategy and you both will be saddled with feelings of frustration.

The Pastoral and Theological Dimensions

Most pastoral ministers have not received specific training in AD or in  the care of persons with memory problems.  As a result, they may not be fully comfortable, and may even feel pastorally unprepared, in the presence of Alzheimer's patients.  Already pressured by other demands on their time and energy, pastoral caregivers may understandably focus on patients with whom they can more easily communicate, or with whom they expect to have a greater "impact". While not intentionally neglected, the person with dementia often ends up spiritually underserved.

Our Catholic faith informs our understanding of the experience of Alzheimer's disease and our response to those who suffer from it.  In our faith tradition, we believe in both the humility and the glory of humankind.  On the one hand, the human being is made from dust.  On the other hand, God created us in God's image and likeness.  In and of ourselves, we are nothing\; yet as persons endowed with God's Spirit, we have been given infinite dignity.

God blesses all of us with many gifts, including our abilities to know, love, and choose.  With Alzheimer's disease, our ability to know falls apart\; we no longer recognize the people we love\; and our choices become unreliable as we drift into incompetence.  How are we to respond when physical illness attacks these gifts?

When physical illness attacks these gifts, we respond as disciples of Jesus.  As his disciples, we believe that the decline of these gifts in no way lessens our infinite dignity as human beings.  From the moment of conception to the last moment of natural death, all persons are in the image and likeness of God.   One does not cease to be in God's image if one loses the ability to remember and reason.

When a person suffers from Alzheimer's disease, God offers us the opportunity to affirm this truth of human dignity in most powerful ways.  As Catholics, we are called to recognize the presence of Christ in every Alzheimer's patient.  When we respond to this presence through active pastoral care, we affirm to the patient God's constant, tender love.  Through our recognition of and response to the presence of Christ in every person, we proclaim to the world the Catholic vision of ministry to Alzheimer's patients as ministry to the suffering Christ.

Pastoral Do's and Don'ts

Do      

· Offer familiar prayers, traditional hymns\; these  access long term memory.

· Provide the sacraments (with simple, concrete explanations).

· Offer a Mass for early and intermediate stage Alzheimer's patients.  The altar, candles, crucifix, vestments, greetings, prayers and responses and the experience of a congregation provide a familiar ambiance.  The homily should be very short and simple. The exchange of peace is an important opportunity for physical connectedness.

· Use holy cards, picture books, rosary beads.

· Consider ways to provide practical and spiritual support to family caregivers.

· Most of all, give the gift of your presence.

Don't

· Read long scripture passages.

· Offer complex spontaneous prayer.

· Conduct a group worship service for people with late-stage AD.

· Give long sermons or lengthy explanations about the meaning of suffering, etc.

Conclusion

Moved to pastoral action through Catholic faith and benefiting from a practical understanding of dementia, pastoral caregivers enter into the communion of God's love with our brothers and sisters who have Alzheimer's disease and related illnesses.

RESOURCES

Alzheimer's Association
Massachusetts Chapter
36 Cameron Avenue
Cambridge, MA  02140
Tel: 617-868-6718
800-548-2111

Net: www.alzmass.org

En espanol: 617-868-8599  

The Chapter provides patient care and family support programs, a helpline, training and education, outreach and other activities.  Over 100 booklets, brochures, books and videotapes are available through the Publications Department.  There are support groups for family members and caregivers, as well as groups for persons with early stage dementia.