Behaviors		Hallucinations and Delusions
	Sleep		Cognitive Problems
	Incontinence		Medical Considerations
	Wandering		Safety in the Home
	Aggression, Agitation and Anger		Caregiver Support
	Depression		The Decision to Place the Individual

Behaviors

The six R’s of Behavior management: (From The 36 Hour Day: A Family Guide to Caring for People With Alzheimer’s Disease and Other Dementia’s and Memory Loss in Later Life) 

• Restrict – important if there is danger to self or others 
• Reassess – why is this happening? Consider medication, time of day, etc 
• Reconsider – try to see things from the patient’s viewpoint 
• Rechannel – use the energy of the person with Alzheimer’s disease to do something else 
• Reassure – if the care receiver appears to be angry, upset, or afraid 
• Review – after any unexpected reaction to prepare for the future and to increase understanding

Between 80 – 90 percent of those with Alzheimer’s will develop some behavioral symptoms – such as sleeplessness, wandering, pacing, aggression, agitation, anger, depression, hallucinations, or delusions. Awareness that difficult behaviors are an effort to communicate that something is wrong, not an effort to be difficult will ease tension between the care receiver and the caregiver, as well developing a focus on problem solving to deal with the underlying cause of the disrupting behavior.

Problem behaviors have as their basis two sets of factors: 

• Internal factors: such as a sense of feeling threatened, loss of control, loss of previous structure, frustration with tasks that exceed ability, misinterpretation of the behavior of others, fatigue, impaired perceptions, pain, and the effects of medication. 
• External factors: including the physical environment, the approach of the caregiver, and environmental stimulation.

Dementia is a progressive, increasingly debilitating illness. Therefore, the treatment must adjust to the individual, rather than be seen as a concrete set of rules that will remain unchanged over time. Each individual is impacted differently, with the loss of function in no straight line. In other words, any attempt to devise one program of standardized care for Dementia would be the same as deciding that everyone diagnosed with cancer should have exactly the same treatment. Knowing this, there are some issues that appear to be fairly universal when providing care to those with Alzheimer’s disease.

Sleep

Betty insisted on taking a nap after lunch every day. When she would wake up in the middle of the night and begin wandering, her husband would prepare a light ‘lunch’ for her. After having a salad, Betty would insist on going to bed for her ‘nap’ and often sleep through until morning.

George would consistently rise early, and begin to get dressed. He often would put his clothes on over his pajamas and head for the door. An alarm on the door alerted his daughter that he was attempting to leave the house. Then, she was able to intervene and remind him that he was retired.

Rita involved her mother in folding the laundry every night. There were always towels that needed to be folded. This became part of a routine, in which the two took care of the laundry every night while watching a taped recording of a music concert. When the concert was over, Rita would announce that they needed to get to bed, because it would be a ‘big day’ tomorrow. Rita’s mother would agree, and the two would prepare for bed.

Problems with sleep include several issues. As a rule, older individuals require less sleep, and thus patients who go to bed early often also rise earlier. Napping during the day can also impact the ability to sleep at night. It is important to establish a routine surrounding evenings, which can include limiting liquids (a confused person may get up to go to the bathroom and ‘forget’ to go back to bed), exercise during the day to expend energy, and setting up a routine of when to go to bed and when to get up. Visual reminders in the bedroom where they will be seen can also remind the individual to stay in bed and get adequate rest. The importance of exercise cannot be over emphasized – it assists not only with sleep, but also with motor skills, balance, and circulation. Keeping the person occupied during the day and limiting caffeine is also recommended. It is also important to monitor medications that might impact sleep.

Incontinence

Ramon loved his TV shows, and would watch television almost all day. He even appeared to enjoy seeing commercials. Often, he would not get up to go to the bathroom so that he would not miss anything. His wife purchased a small television set to place in the bathroom, so that he was able to see the shows and still remain continent.

Ruth would shout at her husband every morning that he had wet the bed. In reality, she was the one that was incontinent. Tom began setting a series of alarm clocks for every two hours, and when a clock would ring, he would take Ruth to the bathroom. Although he believed that this was an ideal system, the toll of his own lack of sleep was enormous, and within a week he had enlisted the assistance of his children to take turns handling ‘night duty.’

John was very pleasant with his daughter, but objected violently to having her assist him with going to the bathroom. The daughter was able to talk about this with a care manager, who suggested altering John’s wardrobe from slacks with buttons and zippers, to pull up slacks with an elastic waist. At first, John would search for the clothes that he was familiar with, but in time adjusted well to the new slacks, and became able to maintain continence when not having to deal with buttons and zippers.

Establishing a routine can decrease problems. Also, making the bathroom easy to find, and using raised seating and grab bars can be helpful. Using incontinent undergarments and pads at night when appropriate and limiting (not eliminating) fluid intake in the evening can reduce the problem.

Wandering

Teresa enjoyed working in the gardens in her community. She belonged to a group that had planted displays in several areas of town, and she enjoyed driving to see them. In time, Teresa had difficulty finding the displays as well as difficulty finding her way home. Her son Miguel developed a plan in which he wrote notes reminding his mother that they were going on a drive to see the gardens in a certain number of days, and placed these visual reminders on the door. He also emphasized how thrilled he was that she was going to show them to him. Theresa became part of the experience in changing the number of days on the reminder, and was reminded every time she went towards the door that it was not time yet to go see the gardens.

Robert had always been in charge of going to the post office and getting the mail. Initially, this was considered by all to be good exercise and a way for Robert to maintain dignity by contributing this to the family. One day, Robert left to get the mail, and did not arrive at the post office. A search discovered that he was walking in circles, having made a wrong turn and just circling the block unable to return home or find the post office. At the family meeting, this problem was discussed, and Robert’s granddaughter volunteered to take a daily walk with Robert to retrieve the mail. Robert was able to continue his task, and spend some quality time with his granddaughter. A note taped to the front door stated, “Bob – wait for Courtney” to keep him from leaving prematurely.

Gladys loved to visit with neighbors, and would walk up and down the street stopping in to visit friends. Family and neighbors eventually noticed that Gladys was continuing to walk up and down the street, but was not stopping at the houses to visit with others. This was exhausting, and at times she would sit down in the street to rest. Neighbors were enlisted to assist Gladys, by stopping to see her. This maintained her contact with others and kept her safe. Sometimes they would stay and visit at her house, other times they would decide together to visit another neighbor.

The first incident of wandering is often when the Care Receiver goes out to retrieve the newspaper or the mail, and when turning around, does not identify the house as their home. They then begin to wander, looking for a home that looks familiar. As time goes on, wandering can become more of an issue, as the person retreats in his or her memory. Loss of judgment is a major factor in determining the level of supervision needed at any particular stage of the disease.

Agenda behavior occurs when the person is remembering and trying to repeat an old routine, such as rising at 6:00 am and trying to leave the house. This may be due to recalling going to work at that time. Knowing this, the caregiver can be prepared to intervene with distraction, reminding the person that he does not have work today, while validating the importance of work for the individual. Another term for this is Retrogenesis, where the person is mentally traveling backwards in time. What used to be true is believed to be true now. The individual may be ‘living’ in a time when he was a soldier in the army, or needed to wait for the children to return home from school. Knowing this about the individual’s history can assist with adapting the environment for his protection.

Relocation or ‘transfer trauma’ is a poor reaction to a change in environment. This can be a result of moving to a facility, or moving from the home that the patient knows to an apartment, or the home of another. This is a consideration in providing in home care – in whose home should the care be provided?

Assistance with wandering can be obtained by encouraging a pattern that alternates periods of exercise with periods of inactivity. Also, having alerts on doors for when they are opened, or locks on the doors placed where the patient will not think to look can keep the individual safely at home. It is important to provide a safe environment with adequate lighting that eliminates shadows, which can be misinterpreted. It is also important to develop an emergency plan for fires, etc. Organization of space for orientation to the present, and information regarding safety can be helpful at early stages of the illness. The caregiver can also present environmental messages through repeated cuing, landmarks, posted signs, and color-coding of areas, and clarify boundaries with color and/or textural differences.

It is also important to have a recent photo in case the individual does wander away. Use of an identification wristband, participation in the Alzheimer’s Association Safe Return Program as well as alerting local authorities and neighbors that wandering may be an issue are also warranted.

Sundowning, which is an increase in confusion later in the day, can be addressed by intensifying attention in the late afternoon and early evening with a ‘cooling down’ period before bed. Once again, establishment of a routine is important.

Pacing can be good exercise, and is often dealt with by falling into step with the individual, and gently redirecting the individual to other activities before the individual becomes exhausted by pacing.

Aggression, Agitation and Anger

Alice remained in the home that she had lived in for over forty years. However, she would go from room to room, appearing to search for something. When asked, she told her children that she could not understand why her husband was not home. When reminded that he had died ten years ago, she became upset, and yelled at her children that they were lying. Later, she became convinced that her husband was not home and having an affair, resulting in her blaming her own daughter for stealing her husband from her. Validation of her sense of loss – of husband, previously enjoyed life, and of the close bond she had become accustomed to with her husband was successful in limiting these angry outbursts.

Carmen had immigrated to the United States from Italy later in life. As the disease progressed, Carmen would increasingly speak in Italian, and become upset when others around him did not understand what he was saying, believing that others were ignoring him. He then would become verbally abusive and impulsive. Carmen’s son was able to engage his father in teaching Italian to the grandchildren. Also, reminder signs in the home were written in Italian, and tape recordings of Italian music were purchased to help Carmen feel more at home in the present.

The family relocated Monica to another state in order to provide care. At first, Monica was in agreement with the move, understanding that remaining alone in the community was not an option, and wanting to avoid placement in a facility. Gradually, however, she became upset and then angry with her daughter and even called the police to report that she had been kidnapped. To try to resolve this anger, the family arranged for a trip back to her previous home, but this did not help, as Monica did not recognize that home either. In time, family members were able to validate Monica’s feelings of being lost.

One study indicates that the majority of aggressive behaviors (72.3 percent) were associated with a response to touch or invasion of personal space as a result of attempts to provide personal care. Imagine if you did not know where you were, and suddenly a stranger came along and insisted that you take a bath! Aggressive reaction to this kind of surprise is referred to as a Catastrophic Reaction. At these times, the past establishment of a routine can be helpful. Some things to remember are: avoid surprises when possible, remain calm, maintain a realistic but positive attitude, emphasize abilities, simplify activities, and encourage repetition.

Reality orientation is an ongoing process. When approaching and individual, remind them who you are and what you are going to do. Continue to do this while you are performing the action, whether it is bathing, feeding, dressing, etc. Also, while you are doing things, remind them of the day, the weather, who you are, what is happening or about to happen. Problems can occur when this is done with questioning the Care Receiver, which tends to ‘shame’ the person when they are not able to answer correctly. A better approach is to tell them who you are, the day, the date, etc.

They may blame things on you – this is an effort at denying that they have a problem. Arguing can only escalate the problem. “You are cruel to me,” can be translated to “Life is cruel to me.” Do not take these comments personally, try to identify the underlying emotion and address that emotion.

Remember to move slowly, talk in a calm, low voice (not high pitched, but loud enough for the person to hear you), use touch, do not argue, praise things you want to continue, and try to ignore things you do not want to continue.

To address loss of sense of mastery, give them something to do that they are capable of so that they will know that they continue to be useful. Remember to thank them for helping. When the individual is upset, try to not become upset, and always remember that it is the illness, not the person that is doing these things. Your calmness will often assist with diffusing the situation.

When the patient is agitated, look for a reason. Perhaps, a trip to the bathroom is needed, or there may be an undiagnosed problem, such as a fracture or a urinary tract infection. Often agitation occurs when personal care is being attempted. This is an effort by the individual to maintain dignity by denying the need for care.

Pet therapy and music therapy are useful in dealing with agitation, as is breaking tasks down into easier parts. Telling the individual to take a bath involves several steps: removing clothes, drawing the water, finding the soap and towels, the actual bathing, drying off, and then dressing after the bath. Remembering all of these steps becomes increasingly difficult.

Those with cognitive impairment have difficulty processing new information, i.e. how to use a microwave, a new phone system, etc. Also, the ability to form new ideas deteriorates, as does the ability to comprehend abstract concepts or generalize.

Removing distractions allows the individual to focus on what is to be done, such as eating. Consider turning off the television at meal times, and not engaging in conversation about other things, but instead talk about how good the food is, suggesting that the individual might like a nice sandwich. If the individual appears to not be eating, a casual reminder, such as, “I believe I am going to eat my grapes, will you have some, too?” can be useful. At mealtimes, offer a simple selection of foods, and if allowing the individual to decide the menu, offer two choices rather than a generalized statement such as, “What would you like for lunch?” Once again, the establishment of routines as often as possible assists the person with knowing what to expect.

Depression

David had always enjoyed fishing, but now when his son invited him to go, he would respond by saying, “Maybe tomorrow.” His son recognized that perhaps his father had forgotten how to fish, and decided to just take his father with him instead of asking. His father would go, but needed encouragement at every step, from dressing for the day to actually getting into the boat to go fishing. His son was able to reframe the experience as spending time in the out of doors with his father, which appeared to relieve some of the resistance to going out.

Rebecca spent most of her time in bed, often in excess of 18 hours a day. She would go to bed at about 10:00 pm in the evening, and would stay there until 3:00 pm in the afternoon. She also was incontinent when in bed, and would not get up to allow for the bed to be changed. A consultation with her physician resulted in the prescribing of anti depressant medication, coupled with an established routine of something to look forward to was successful in increasing activity and delaying becoming bedfast.

Thomas was unable to sleep at night, and often spent the nighttime hours sitting in a chair in front of the television, napping often. Family members created a memory book, full of photos from his past that they would then ask for him to tell them about. Thomas was happy to talk about these photos, sharing his life experience with his grandchildren and others.

Depression is common in the early stages, when the individual is aware that there is a problem, but cannot understand what is going on. The resulting loss of initiative, apathy and withdrawal actually are understandable when you consider that every day the person wakes up in a strange place, surrounded by strangers, with items present that should make sense – but they do not. Reassurance is vital as is consistency in providing care, and a daily routine.

To look for depression, do not focus on what is generally seen as depressive symptoms, but instead look for irritability, somatic complaints, loss of interest in the environment, worrying (without being able to express what they are worrying about, which often leads to wandering to find the ‘lost’ item), the impulse to cry (without being able to express why), and difficulty concentrating.

As the illness progresses, the person with Alzheimer’s disease forgets that things have been forgotten. Generally, depression is much less of an issue in the later stages.

Hallucinations and Delusions

Marie stomped around the house appearing angry. Her husband knew that something was bothering her, but had no idea what it could be. He decided to ask her what was troubling her, and she told him that she knew he would not believe it, but that at night after he went to sleep, someone in a van was driving around the neighborhood with a loud speaker announcing the names of all of her deceased relatives with the dates that they had died. She reported that at the end of this litany of loss, he would announce that she was still alive and give her address. Instead of trying to point out that this was absurd, her husband stated that this kind of thing would be a definite invasion of privacy, and that if it happened to him, he would be very angry indeed. He requested that the next time she heard the speaker, that she wake him up so that he could try to make it stop. Marie agreed to do so, and two days later, announced that someone had taken the driver’s license away.

Frank would appear to be listening intently to something that no one else could hear. When asked what he was listening to, he would ‘shush’ the other person and continue listening. Observing him while he was listening and picking up cues about when the listening was over, asking again what he had been listening to, Frank was able to report that he had been listening to his mother and did not want to miss a word. Reflection on how much he missed his mother, father, and the life when things made sense helped Frank continue to function.

Edith was observed to be not eating, especially at breakfast. Her daughter did not understand this, because the menu had always been one of her favorites, oatmeal. One day at breakfast, her daughter asked if there was something wrong with the food. Edith stated that she certainly could not eat anything like that with all those bugs crawling around in it. A change in menu to finger foods such as French toast sticks was successful in allowing Edith to remain independent with eating.

Hallucinations and delusions can be a reaction to medication, poor vision, or due to Retrogenesis, which is a return in the mind to past activities. A person living in the past will see a young person, and mistake that person for someone from their past.

Seeing bugs or other moving things, or hearing sounds are common hallucinations. Check with the Primary Care Physician see if these could be medication related, or a result of inadequate lighting, improper prescription glasses, hearing aids batteries that need to be replaced, or the presence of distractions. Some people with Alzheimer’s disease appear to have difficulty knowing that what is on the television is not real.

Validation Therapy is useful when an individual with dementia becomes upset and appears ready to strike out. It is a way of not confronting the individual with ‘the facts’ but instead trying to address the underlying emotion. Asking the care receiver what would be a good solution can engage them in the process, and also be a good source of information about the thought process that they are experiencing. (For additional information about Validation Therapy, see the listings for Naomi Feil in the suggested readings.)

Cognitive Problems

Harry was an accountant and had delighted in numbers all of his life. He managed the checkbook at home, and his wife had never had to deal with paying the bills. One day, there was a call from the bank that the checks they were receiving could not be honored, because they were dated incorrectly, and the signature was simply Harry’s first name. Harry’s wife felt at a loss to take over this task, and Harry’s son was able to take over the bill paying duties, allowing Harry’s wife to focus on providing care to Harry.

Inez was observed sitting at the table counting photos. She was unable to keep count, and repeatedly had to start over again. Her daughter was able to assist by remarking on how nice the photos were, and counting them with Inez, saying, “I like this one best. Oh, I like the one by the tree – that makes two…” This diffused the situation and gave Inez the information about how many photos there were.

Kyle had worked all of his life in construction. He still enjoyed tinkering with his tools, and building small items such as birdhouses. He was, however, becoming frustrated with his inability to measure and cut the pieces. His son was able to find kits with precut pieces, taking all of the pieces out of the package and leaving them in the workshop for his father to finish putting them together. In time, it became a joint activity for Kyle and his son to construct the birdhouses together.

By definition, Alzheimer’s disease includes declining cognitive abilities. However, no two people have the same abilities to begin with, and losses may occur earlier or later in some individuals than in others. Things to look for include forgetfulness, difficulty recalling names of items and people, difficulty with concentrating and calculation, spatial disorientation, difficulty with translation from task instruction to task performance, inability to perform three step directions, inappropriate sexual behaviors, rummaging, hoarding, and ‘covering.’ Hording is when the individual appears to believe that there will be a shortage of a certain item, and in response, they gather all that they can find of toilet paper, paper towels, newspaper, etc. and keep the emergency ration for future need. Covering is when the person with Alzheimer’s disease will create ways to hide their limitations. For instance, at a restaurant, if the person is no longer able to make sense of the menu, they may repeatedly order the same food, or simply say, “Oh, I’ll just have what you’re having.”

Sudden changes in mental state indicate that something else is complicating the clinical picture. However, becoming aware of a change that developed gradually can occur suddenly. When in doubt, check with the Primary Care Physician.

If possible, take activities that the person enjoyed in the past and adjust them to current abilities. Examples are listening to music for those who enjoyed playing music in the past, or reading to those who previously enjoyed reading. Activities for older adults with dementia should reflect the cognitive abilities that remain, which are often underestimated, instead of focusing on what is no longer possible.

Those with Alzheimer’s disease develop difficulty in remembering the names of things, and will use the wrong word. At first, this inability to find the right word results in the person defining what they mean. As the illness progresses, they begin to make up words. Deciphering this code, or watching for non verbal cues to figure out what the person is trying to relay is important.

Repetitive motions can be an indication that the person is ‘stuck’ and cannot remember what to do next. You can gently direct them to the next step, using words, touch or modeling to redirect.

At some point, the person with AD will begin following their caregiver everywhere. This may be due to everything else not being remembered, and thus because the caregiver is the focus of familiarity and safety, it is vital that you are not ‘lost’ as well.

As time goes on, the person is less able to perform any given task, and is less able to communicate needs. However, it is important to remember that cognitively impaired individuals still have unique qualities and rich histories. Whenever possible, the caregiver should work from the reality of the person with dementia rather than try to impose his or her own reality.

Decisional incapacity in some dimensions does not mean decisional incapacity in all dimensions. Continue to involve the patient in decision making as appropriate to his or her abilities, such as deciding what to wear, eat, or watch on TV, limiting choices to two or three options to reduce frustration.

Medical Considerations

Lisa appeared to be adjusting well to living with Alzheimer’s disease. There was an established routine and all seemed well. One day, Lisa woke up and showed no interest in communicating, appearing to stare without understanding at others. After calling the Primary Care Physician, it was decided that Lisa should be taken to the hospital, where it was found that she had suffered a ministroke.

Omar was pleasant and cooperative with care, except that he always took out his dentures, wrapped them in a napkin or tissue and placing them in a wastebasket. His daughter was able to recognize that there was a problem, and a trip to the dentist revealed sores in his mouth that responded well to treatment.

Nancy spent most of her time walking. The family had fenced in the backyard and planted flowers along pathways, where she could spend time looking at the flowers and enjoying the out of doors. Her son noticed that Nancy seemed to be favoring one leg, and after talking with the Primary Care Physician, it was determined that the medication that Nancy was taking for her Arthritis was no longer effective. A change in medication was put in place and the limping stopped without limiting her ability to enjoy her garden.

The person who is diagnosed with Alzheimer’s disease is not suddenly cured of all other ailments. Those with high blood pressure, diabetes or any other chronic condition will continue to need treatment for that condition. There was a time when, because the demented person did not complain of pain, that pain medication would not be given. It is now known that although they may not be able to verbally communicate that there is distress, the nonverbal communications are there for caregivers to read. These can include walking with a limp, restlessness at night, refusal to sit on a hard chair, repetitive motions, or a host of other examples. Treatment of these known conditions is needed, as well as diagnosis and treatment of any other new condition that may occur. Any change in behavior, no matter how small needs to

• Three Questions About Driving and Dementia
• Phases and Stages of Alzheimer’s Disease
• Alzheimer Behaviors
• Planning for Alzheimer’s Care
• Relationship Changes With Alzheimer’s Patients
• Alzheimer’s Disease/Dementia Tip Sheet

	Introduction
	An Alzheimer’s Disease Scenario
	Tips to Help You Cope With a Family Member’s Alzheimer’s Disease
	Seek Professional Help
	Be Optimistic

Introduction

Here are some suggestions for family members who sometimes feel upset or lost upon hearing their  family member with Alzheimer’s disease say some startlingly strange comments.

Because people who have Alzheimer’s disease loses their thinking abilities, they also steadily decline in their ability to participate and manage their share in a relationship. Any sort of jumbling of names, relationships, time, location, can occur.

Also, processing emotion and responding with feeling requires verbal skills which the patient is in midst of losing. Not only will the individuals with Alzheimer’s disease  have difficulty  recalling and using facts accurately in a conversation, they will also gradually show strange or no emotional understanding of what is presented.

An Alzheimer’s Disease Scenario

Here is an example of  a factual and emotional loss, each resulting from the Alzheimer’s disease. If you relate to the following scenario, the tips below may help you navigate the frustration of living with this disease.

Dad suggests writing to “your uncle”, while in reality referencing your son. When you state the obvious correct facts calmly, dad doesn’t recall making the comment. The conversation continues, he says the exact same message. This time, responding calmly is more difficult. You sound exasperated and dad is bewildered as to why. You explain the reason and he shrugs, still not understanding, and then moves on to another activity.

Tips to Help You Cope With a Family Member’s Alzheimer’s Disease

• Recognize unusual responses and conversation for what it is: Alzheimer’s disease announces itself through random series of lost functioning, reasonable conversations being one area. If you notice someone you know saying strange things, this could be Alzheimer’s disease “talking”, and not the person. 
• Don’t try convincing or persuading the person of the “facts”: this will probably result in each of you becoming more stressed and frustrated. 
• Recognize that your relationship with the patient is shifting. 
• Accept that the “before” behaviors and ways of the patient are leaving. 
• Be honest with yourself about your feelings living with the “after” picture (person).

Seek Professional Help

Adjusting to the above is complicated: it is difficult losing a relationship with someone when discussion is possible and there is extreme disagreement. It is extraordinarily strange to lose a relationship because one person gradually cannot discuss anything. Clinical social workers can help you address any particulars of your inner reactions to such a situation. 

Be Optimistic

Although reasoning and language skills gradually leave the patient, the patient often can still relate with simple emotions. Smiles of recognizing familiar others, or of gentle touch continues long into the illness. Your loved one may be able to communicate non-verbally, so try getting the most of that capacity.

Related Articles:

• About Alzheimer’s Disease/Dementia
• Alzheimer’s Disease/Dementia Current Trends
• Alzheimer’s Disease/Dementia: Your Options
• Alzheimer’s Disease/Dementia: How Social Workers Help
• Alzheimer’s Disease/Dementia Tip Sheets
• Resources for Alzheimer’s Disease/Dementia
• Alzheimer’s Disease/Dementia Real Life Stories

	When to Start Planning
	How to Start Planning
	Factors to Consider in Deciding to Provide Care in the Home

When to Start Planning

The answer to this question, in light of the facts is very simple – now! At the very least, planning should begin when the diagnosis is confirmed by a medical professional. The shock of the diagnosis may be mixed with relief at now having a name and a reason for the changes that have been observed by others and experienced by the individual.

Because of the importance of involving the patient in planning his or her future, assistance with making the important decisions surrounding this illness are best addressed early while the individual is able to participate in the process.

Legal issues, such as the development of Advanced Directives and appointing a Medical Power of Attorney as well as creation of a will and appointment of a financial Power of Attorney are appropriate at this point, if not already in place. These can only be developed by a capacitated individual, and thus will not be possible later. Because regulations surrounding these documents vary from state to state, the Caregiver needs to research the laws where the Care Receiver is living.

How to Start Planning

Caregiving requires a three-pronged approach. Three groups need to be part of the team: 

1. Professional caregivers, such as doctors, nurses, therapists, social workers, care managers; 
2. Family caregivers including immediate and extended family, church members, neighbors, civic groups, friends; and 
3. Care Receiver.

The goals are optimal level of functioning and enhancement of quality of life for everyone involved.

Although it is true that generally one individual is identified as the Primary Caregiver, the team approach is useful in knowing that this is not a responsibility that any one person is capable of managing independently. A group meeting of all who will participate in the long term care of the individual is appropriate to devise a plan of care, knowing that over time this plan and the membership of the group will change as needs change and become greater. At these meetings, it is important to stick to the facts and not argue. Having a moderator, such as a professional care manager can provide guidance with what has worked with others, and also to assist with concerns if there are disputes between family members. It is vital to discuss issues, such as others joining the team, some leaving due to other commitments, and personal issues such as their own health concerns. Be prepared to reassess every few months, more often as needed or if there is a dramatic change in the status of the care receiver, care giver, or available supports.

When asking for help, be specific about the need. People respond better when they know specifically what they can do to help. Being asked to go shopping is easily understood, whereas being asked to ‘help’ is less tangible. Having a back up plan is essential. Do not hesitate to have a back up person. Write down schedules and give a copy of the schedule to everyone involved.

There are many individuals who interact with the Care Receiver on a regular basis, and they, too can also be of assistance with observations and ideas. Consider the paper carrier, mail carrier, superintendent of the apartment building, barber or beautician, neighbors, friends, and any others who may interact with the patient from time to time.

Be honest with children, and involve them in an age appropriate manner. Smaller children can visit, draw pictures, and send cards, thus bringing joy to the Care Receiver; older children can assist with errands, cooking, and other tasks.

Factors to Consider in Deciding to Provide Care in the Home 

• The health of the caregiver. 
• The proximity of the caregiver to the care receiver – will relocation be needed and is it possible? Also, if relocation is needed, who is going to move? Moving the care receiver away from a familiar environment can have an immediate and lasting effect on functioning. If the caregiver feels forced to move, there might be resentment that can impact care. 
• Level of care needed. This will change over time. 
• Existence of a back up plan for emergencies. 
• Resources to hire outside help if needed. 
• Ability of the individual with dementia to accept other caregivers. 
• Emotional support for all family members. 
• Location of valuable papers, such as will, living will, birth certificate, bank account numbers, insurance policies, retirement plans, etc. 
• The availability of respite. 
• Finding a good Primary Care Physician.

Finding a knowledgeable Primary Care Physician who can assist with diagnosing and treating any possible coexisting conditions that already exist or may develop in addition to AD is essential. More than one doctor may be needed to address different aspects of care, however it is always a good idea to have one doctor who has all of the records and information. A good Primary Care Physician will be able to assist with education as to signs and symptoms that are indicators that something is wrong or changing. Also, as a caregiver, you are in the best position to know when ‘something is wrong or different’ due to daily interaction with the individual. Because the demented individual is in time unable to communicate what the problem is, the caregiver needs to document any changes in appearance or behavior, no matter how insignificant they appear to be, and be able to tell the Primary Care Physician what is happening. An added bonus is doctors or nurses that will make house calls on a regular basis, and thus see the individual in their environment.

Related Articles:

• About Alzheimer’s Disease/Dementia
• Alzheimer’s Disease/Dementia Current Trends
• Alzheimer’s Disease/Dementia: Your Options
• Alzheimer’s Disease/Dementia: How Social Workers Help
• Alzheimer’s Disease/Dementia Tip Sheets
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	Introduction
	The Phase Model
	The Staging Model
	The Seven Stage Model
	The ABC’s of Alzheimer’s Disease

There are more than 70 known disorders that can result in dementia, including Pick’s Disease, Multi-Infarct Dementia, and Parkinson’s disease, although Alzheimer’s is the best known. It is estimated that one third of all families are impacted by having a loved one diagnosed with Dementia. Although it may be true that the majority of these individuals will be admitted to a nursing home, it is not true that this is the only answer. In fact, even if placement in some kind of assisted living is the choice of the individual and the family at some point, because of the slow progress of the disease, the individual with Dementia may not be appropriate for nursing home care for several years.

In 2003 the worldwide cost of Alzheimer’s disease (AD) was estimated to be $156 billion, with estimates that 27.7 million people suffered from this condition. By 2040, predictions are that 14 million Americans will be diagnosed as having AD.

Currently, five of every one hundred people age 65 are affected with AD. This number rises to twenty of every one hundred at age 85. It is estimated that by the year 2030 about 51 million individuals will be 65 and older – the most vulnerable age for the onset of AD. Also, almost all persons with Down’s syndrome who live to the age of 45 will develop AD.

The average lifespan after diagnosis is 8 years, but can be as few as 3 or as many as 20 years.

Studies reveal that 80% of caregivers are female – 31% are spouses and 59% are adult children. Full time employment is an issue for 40% of caregivers. Spouses need to be concerned with their own health conditions in addition to the burden of caregiving; adult children need to deal with being part of the “Sandwich generation,” having responsibility for their own families as well. Another factor in home-based care is the universal tendency toward shorter hospital stays, resulting in more intense medical tasks to master as a caregiver. Although the general information in this presentation is accurate, it is important to remember that each person with AD will be affected differently.

Models for Understanding Alzheimer’s Disease

The Phase Model

• Phase I: Indicators are forgetfulness – where items are placed, appointments, names, and associated anxiety about forgetting.
• Phase II: Indicators are confusion and intellectual impairment, problems with recent memory, concentration, and orientation; ‘covering’ becomes more difficult.
• Phase III: Delusions, agitation, loss of basic abilities, and incontinence increase.

The Staging Model

Early Stage, also called Moderate – average length of this stage – 2 to 4 years

• Inability to retain information recently taught, such as programming a VCR or clock radio; adjusting to a new phone system; remember how to buzz someone into the building if recently relocated to a secured apartment building. There will be some ‘clear’ moments when the individual seems to be perfectly normal. 
• Losing things or placing them in unusual places – resulting in lost eye glasses, hearing aids, and dentures, often wrapping them up in a napkin and throwing them away. Never empty a wastebasket without checking! 
• Getting lost when away from home, resulting in an increased need for supervision.
• Loss of interest in previously enjoyed activities, which may be related to forgetting how to perform the task, resulting in a need to adapt previously enjoyed abilities to the level of ability that the patient is now capable of. 
• Language and perception deteriorate. There is difficulty finding the right word or name, difficulty interpreting events properly. The person now sees everything through the ‘lens of the past,’ instead of being able to see the event as a new and different event. The result is that the patient may resort to shouting, withdrawing, telling others that they are lying. 
• Abstract thinking becomes more difficult. Things such as numbers lose their meaning. Connecting thoughts also deteriorates, resulting in poor decision making, including difficulty handling money, paying bills. 
• The patient becomes more in tune with the emotions of others, even while forgetting life patterns and roles; often resulting in becoming upset if the caregiver is upset and remaining calm if the caregiver remains calm. 
• Characteristics that may have been buried can become dominant. A formerly mild mannered person might begin to swear or become verbally abusive, or become impulsive. It is as if the ‘social graces’ disappear, with whatever comes to mind being acted upon. 
• There is loss of the sense of time. There is no past or future; there is only right now. 
• The person is more dependent on the environment and on others for cues about how to act. This can result in forgetting to go to the bathroom unless visually or verbally reminded. 
• The individual is aware that something is wrong, but generally keeps this to himself (covering), resulting in limited choices. They usually see this as a personal failing, not part of the disease. Even when diagnosed, they may deny that this is true, especially in public. 
• Previously understood tasks become more difficult to perform.

It is vital to understand that these are not choices but instead are a result of the disease. Efforts should be concentrated on providing a safe environment and emotional support while guiding the person to complete the tasks that are becoming more difficult. Praise for efforts needs to be a regular event on an ongoing basis.

Mid Stage – average length of this stage – 2 to 10 years 

• There is a progression from forgetfulness to confusion. 
• Efforts to ‘keep up appearances’ are slowly abandoned. The care receiver perceives himself as competent, and the world as ‘crazy.’ 
• Attention span grows shorter. 
• Emotions are unpredictable, and patient is less inhibited. Due to the frustration of living in a ‘crazy’ unpredictable universe, aggressive outbursts can occur as the person becomes frustrated. 
• There are increases in restlessness and wandering, with the appearance of looking for something, and being unable to state what it is that they are searching for. Often this behavior is more pronounced in the late afternoon and evening (Sundowning). The person may believe that it is time to go to work, pick up the children from school, or another task that previously gave meaning to their lives. Also, they may state that they have to go see their parents. This is interpreted as a desire to return to a time when ‘mom’ was able to making everything OK again; searching for a time and place where things made sense. 
• Refusal to do activities that were previously pleasurable. This is often a result of inability to recall how to perform the task. 
• Loss of impulse control, resulting in inappropriate activities in public. 
• Repetition of words, statements or actions, getting stuck in an activity and being unable to recall the next step. Also, receiving comfort by repeating what they recall – a ‘sing-song’ type of experience. 
• Difficulty with motor control, resulting in bumping into furniture, doorways. Decreased perceptual ability is also a factor, with a ‘tunnel vision’ of sorts. 
• Delusions – seeing or hearing things that are not there. This is a major safety issues and a needs to be discussed with the Primary Care Physician (PCP). 
• Decreased need for sleep, often less sleep than the caregiver requires. 
• Clinging to the caregiver, finding this to be an island of sanity in an insane world.
• Darkness, shadows, certain smells, high room temperature, noisy confusing sounds, boredom and over stimulation can lead to increased confusion, resulting in aggressive behavior. Similarly, adequate lighting, soothing smells, appropriate room temperature and the avoidance of excessive noise can result in a calmer individual.

Late stage, also called Severe – average length of this stage – 1 to 3 years 

• Inability to carry on a conversation, but can sing or say prayers from memory. 
• Rocking, undressing, pacing and repetitive motions increase. 
• Not making eye contact. 
• The person does not recognize their reflection in a mirror; also not recognizing close relatives or friends – see others as ‘nice strangers.’ This is especially difficult for very close relatives to understand as they witness the disappearance of the person they knew and loved, and yet that person is still in front of them. 
• Increased likelihood of falling due to balance problems and detachment from reality. 
• Incontinence. 
• Difficulty swallowing when eating, and choking. 
• May have seizures, infections.

The Seven Stage Model

This model presents an overall look at cognitive decline, and a way of placing all individuals somewhere on this continuum.

• Stage 1: No cognitive impairment.
• Stage 2: Very mild cognitive impairment. Individuals are aware that they are having memory lapses, such as misplacing keys, forgetting familiar words. There are no deficits obvious to friends, family or co-workers.
• Stage 3: Mild cognitive decline. Others begin to notice deficiencies, clinically measurable loss of retention of reading material.
• Stage 4: Moderate cognitive decline – Mild or Early stage AD. Clear-cut deficiencies, such as knowledge of recent events, impaired math ability, difficulty with complex tasks, forgetting one’s own history, withdrawal from challenging situations.
• Stage 5: Moderately severe cognitive decline – Moderate or mid stage AD. Major gaps in memory and deficits in cognition, difficulty with day-to-day functioning.
• Stage 6: Severe cognitive decline – Moderately severe or mid stage AD. Memory continues to worsen, personality changes may emerge, the need for assistance with Activities of Daily Living (ADLs), disruption of sleep cycle, incontinence, significant personality changes, wandering.
• Stage 7: Very severe cognitive decline – Severe or late-stage AD. Loss of ability to respond to environment, speak, and ultimately to control movement.

The ABC’s of Alzheimer’s

This model is more concrete, and does not indicate any time line, but generalizes on the kinds of changes observable in those diagnosed with AD.

Activities of Daily Living

• Spending less time on hobbies, such as reading or gardening. Previously enjoyed leisure activities disappear.
• Having difficulty doing household chores such as setting the table, doing laundry, using appliances.
• Having trouble traveling alone. Forgetting to pay the fare in a taxi, or being unable to tell the driver the address where they are going. Loss of ability to turn around and find the way back.
• Needing assistance with ADL tasks such as dressing, eating and grooming.

Behavior

• Being withdrawn or overly quiet.
• Acting suspicious, having delusions, experiencing hallucinations.
• Feeling sad, confused, depressed, irritable, anxious, or aggressive (mood changes).
• Acting restless, wandering, experiencing sleep disturbances.

Cognition.

• Forgetting familiar words, people, and places.
• Finding it hard to follow directions or do calculations.
• Forgetting the day, year, season, where they are, and what things are going on around them.