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A simple test developed by Lisa P. Gwyther, author of “Care of Alzheimer’s Patients: A Manual for Nursing Home Staff,” helps distinguish people with normal forgetfulness from people with Alzheimer’s Disease.
When a person with normal forgetfulness forgets the name of someone or something, it is usually remembered later. Alzheimer’s patients forget the person whose name they were trying to remember.
If an item like a house key is lost, the normal brain knows how to find it by retracing steps. Alzheimer patients may not recall the last time they had their keys or they may fabricate a story to explain how the keys were lost.
While many people forget parts of stories, or unimportant facts of an experience Alzheimer’s patients forget entire recent experiences.
Healthy brains forget events that occurred long ago more often than recent events, while Alzheimer’s patients most often forget what happened just minutes before.
Normally forgetful persons can use reminders and notes better than an Alzheimer’s patient can.
Normally forgetful individuals never lose the capacity to be self-orienting. For example, it’s common to forget upon first awakening in a new or strange place, how you got there or where you are, but you know how to look around the room, look outside and check for clues. Alzheimer’s patients lose the capacity to search for and use clues that would help them to orient themselves.
Normally forgetful people may repeat stories to distant friends that the friend has already heard. Alzheimer’s patients may repeat the same question several times in an hour to the same person.
The Mini Mental State Exam (MMSE) is a tool used by health care professionals to assess a person’s memory, concentration and cognitive skills. The exam takes only 5 to 10 minutes and consists of a series of questions which cover five areas: orientation, short-term memory retention, short-term memory recall, attention and language. Research has shown that the MMSE is a reliable and valid indicator of cognitive impairment. Although the procedure is simple, only trained professionals should administer and score the exam.
The MMSE is scored on a scale of 1-30. A score of between 24-30 is considered to be in the normal range for cognitive ability. A score of between 20-23 indicates that the person has demonstrated mild cognitive impairment and may signify early stage Alzheimer’s Disease. A score of 10-19 suggests a more serious cognitive impairment, and is indicative of moderate or middle-stage Alzheimer’s Disease. A score between 0-9 is typical in late stage Alzheimer’s.
While the MMSE is a useful tool for health care professionals evaluating the severity of a person’s cognitive impairment, diagnoses should not be made using the MMSE alone. The diagnostic process for Alzheimer’s (click here for more information on the steps to diagnosis) involves ruling out other conditions that may also result in compromised cognitive abilities.
Scientists know genes are involved in Alzheimer’s. There are two categories of genes that can play a role in determining whether a person develops a disease. Alzheimer genes have been found in both categories:
1) Risk genes increase the likelihood of developing a disease, but do not guarantee it will happen. Scientists have so far identified one Alzheimer risk gene called apolipoprotein E-e4 (APOE-e4).
APOE-e4 is one of three common forms of the APOE gene ( the others are APOE-e2 and APOE-e3). APOE provides the blueprint for one of the proteins that carries cholesterol in the bloodstream.
Everyone inherits a copy of some form of APOE from each parent. Those who inherit one copy of APOE-e4 have an increased risk of developing Alzheimer’s. Those who inherit two copies have an even higher risk, but not a certainty. In addition to raising risk, APOE-e4 may also tend to make symptoms appear at a younger age than usual.
Experts believe there may be as many as a dozen other Alzheimer risk genes in addition to APOE-e4.
2) Deterministic genes directly cause a disease, guaranteeing that anyone who inherits them will develop the disorder. Scientists have found rare genes that directly cause Alzheimer’s in only a few hundred extended families worldwide.
When Alzheimer’s Disease is caused by deterministic genes, it is called “familial Alzheimer’s Disease,” and many family members in multiple generations are affected. True familial Alzheimer’s accounts for less than 5 percent of cases.
Genetic tests are available for both APOE-e4 and the rare genes that directly cause Alzheimer’s. However, health professionals do not currently recommend routine genetic testing for Alzheimer’s Disease.
(Source: Alzheimer’s Association)
Generally, the limitations inherent in having Alzheimer’s requires that the diagnosed person live in some level of assisted living arrangement, whether this be a family caregiver, employed live-in help or in a residence or nursing home. During the earliest stages of the illness, however, many individuals can successfully live autonomously, as long as systems are in place to support any limitations they may experience.
Here are some suggestions to help persons continue living on their own for as long as possible:
Contact your local CLSC/CSSS: explain that you have been diagnosed with Alzheimer’s and request that a social worker assess you for assistance programs such as housekeeping or meal preparation.
In Montreal, transportation to doctor’s visits and appointments can be arranged through “Transport Adapté” at minimal cost. (514) 280-8211
Contact your bank manager: ask about banking at home services, as well as services that “direct deposit” cheques and pay bills automatically.
Streamline and organize your clothing and possessions. The more organized you are, the easier it is to locate misplaced items and make choices more quickly.
Keep your address and a map to home in your wallet or purse.
Leave a set of keys with a trusted neighbour.
Purchase electrical appliances (i.e. iron, kettle, coffee maker) that shut off automatically.
Keep a calendar for appointments and reminders and consult it often.
Use post-it notes for reminders (i.e. take out the garbage on Thursday morning, turn off the stove). Make sure they are easily visible.
Label drawers, cupboards and closets with their contents using words or pictures.
Keep emergency numbers, your address and telephone number next to the telephone.
Check your smoke detector and change the batteries regularly (schedule battery changes on your calendar).
Have a friend call you to remind you of important appointments.
Ask for help when you need it and accept help when it is offered.
Take your time, take a break and relax if you are feeling overwhelmed.
Look ahead: make plans for a time when you can no longer manage on your own. Explore your options for assisted living should it becomes necessary. Whenever possible, have plans in place before you need them.
Because Alzheimer’s Disease can impair an individual’s self-awareness and insight, caregivers often have to step in when a person is no longer a safe driver. To help caregivers make that determination, the Mayo Clinic has compiled a list of warning signs of unsafe driving:
Forgetting how to locate familiar places
Failing to observe traffic signals
Making slow or poor decisions
Problems with changing lanes or making turns
Hitting the curb while driving
Driving at an inappropriate speed
Becoming angry and confused while driving
Confusing the brake and gas pedal
For many families, determining that the person with dementia is no longer competent to drive is a source of apprehension and conflict. Just as for many teenagers, getting a driver’s license is a symbol of independence and maturity, for many individuals with dementia, no longer being able to drive is symbolic of loss of dependence and inadequacy. Often, driving was a pleasurable, routine part of adult life. The feelings associated with that loss can be powerful and intense.
For some individuals with Alzheimer’s, driving becomes an ongoing issue. Even when, in the early stages of the disease, the person may willingly relinquish his or her licence, the desire to drive may re-emerge as his or her insight and memory becomes more impaired. Here are some strategies that may help you keep your loved-one from driving:
Get a doctor’s note
Hide the car keys (or the car! Park around the corner)
Disable the car (have a mechanic install a “kill switch”)
Arrange alternative transportation or deliveries
Caring for a person with Alzheimer’s necessitates that some changes be made to the person’s environment in order to ensure safety. Here are some household safety guidelines to consider:
Make doors and windows secure: Since people with Alzheimer’s Disease tend to look only straight ahead, place locks out of sight, near the floor. You may also consider installing door and window alarms or buzzers, or pressure sensitive mats.
Place coloured tape on large windows and patio doors to avoid injuries caused by walking into the glass.
If staircases are easily accessible, consider installing a gate (consider, however, whether your loved-one is likely to try climbing over the gate).
Know the location of the fire extinguisher.
Install safety catches on the oven and dishwasher, as well as on any drawers or cupboards containing dangerous materials (knives, cleaning fluids, tools, etc.). Install locks on any closets that contain dangerous items. Remove knobs from stove.
Remove or tape down any loose mats.
Remove or move any furniture that obstructs your loved one’s movements.
Make sure that floors are not slippery.
Room lighting should be neither too bright nor so subdued that it causes shadows. Shadows can cause distress.
Make sure you can unlock the bathroom door from the outside. If a key is required, know the location of the key.
In the bathroom, install a non-slip tub mat, bath bench, and grab bars in the shower and next to the toilet.
Set the water heater temperature no higher than 110ºF.
Know the location of first aid supplies and emergency medications.
In Quebec, the CLSC/CSSS is responsible for helping people who live in the community. They are divided by district. Each CLSC/CSSS provides different services based on the population of that specific area. Services are allocated through a social worker, so there are benefits to having a social worker assigned to your loved one as early as possible. In case of an emergency, if you have a file with a social worker, you will access services more easily.
Services can include:
Access to government day centres
Help with showers (1-2x/week)
In home caregivers
Placement into a public facility
Referral to other departments: Occupational therapists, physiotherapists, nurse, etc.
Short term counselling
Referrals to community organizations
In order to get a social worker, you will need to:
Call the intake department of your local CLSC/CSSS
Schedule a first meeting
Establish a relationship with the social worker
A positive relationship between the family and the social worker can be facilitated by employing the following strategies:
Pick a spokesperson to represent the individual who has Alzheimer’s. Not only does this help the family get consistent information, it also reduces the amount of calls for the social worker.
Keep a record of your calls to and contact with the social worker.
Keep a record of your loved one’s behaviours.
If you are unhappy with your social worker, first discuss this with him or her. Explains your needs. Are your expectations of the social worker or the CLSC/CSSS realistic?
If all else fails, go to the social worker’s supervisor. Explain the problems. Perhaps there is a misunderstanding. You can always be assigned to a new social worker.
Be sure to advocate on behalf of your loved one.
A common source of stress and conflict in Alzheimer’s-affected families relates to difficulties in trying to integrate a home care worker. For the individual who has dementia, the outside assistance is often seen as a threat to his/her independence or an invasion of privacy. There are some strategies than can help a home care worker overcome the client’s natural resistance.
Before arriving at the first visit, the home care worker should:
Get background information about the individual’s life experience, lifestyle, family and culture.
Get information about the routine and try to integrate yourself into the pre-existing routine.
Getting in the door:
If the person is capable of understanding the reasons for you being there, always introduce yourself first and then explain the purpose of your visit.
Immediately try to establish a friendly rapport.
Be creative-even if it involves sugar coating the truth… but always be respectful.
In the beginning, focus on managing some household chores rather than actual hands on care.
When the person with Alzheimer’s lives with a family member, focus the attention on the family member as the one needing help, not on the person with the illness.
Seek the help and advice of a person held in high regard, such as a family doctor or a family friend. Employ this trusted status as a means to communicate your concerns.
During the visit:
Keep in mind the possible existence of cultural differences, language barriers and gender dynamics.
Address the person by name each time you communicate with him/her.
Be very friendly but respect the person’s boundaries.
Speak slowly and clearly.
Give one instruction at a time.
Give choices, but limit the number of choices.
Never talk about the person as if he/she were not there.
The decision to place a family member in a nursing home is never an easy one to make. It is painful to realize that your loved one can no longer be sustained in his or her own home and that your care giving efforts, no matter how extensive, are no longer enough. This difficulty is often compounded by fear or myths surrounding nursing homes and hospitals as “institutions” which are full of “crazy” or “unpleasant” people. In fact, nursing homes are full of people who are ill – and very often the people have the same illness as your family member. It is important to base the decision to move a family member into a nursing home on the demands of the disease and not on stereotypes about the system.
When choosing a residence for your loved one, visit the establishment more than once, bring someone with you and explore your options. Bringing a checklist of questions can help you make a more complete and organized assessment during this emotional time. Be sure to ask questions about:
Philosophy of care, ambiance and cultural fit
Staff education and training in Alzheimer’s care and continuing education
Continuity of care (as the disease progresses)
Ratio of staff to residents
Policies on safety, medications, restraints, toileting and visitation
Support services for family
Basic costs and costs of “extras”
Alzheimer Groupe (A.G.I.) Inc. counsellors can provide you with a thorough Nursing Home Assessment Checklist. Provide link 514 485-7233 or firstname.lastname@example.org
Alzheimer’s Disease and other conditions which cause memory loss lead to communication challenges. A person who has dementia is likely to:
Have difficulty interpreting information and expressing him/herself.
Be unable to think logically.
Be unable to switch from one subject to another quickly.
Know what they wish to say, but unable to find the words.
Understand only part of a conversation.
Be able to say the words but unable to do the action (Aphasia).
Lose high frequency sounds (t, f, d, g, c) and as a result, misinterpret what is said.
Respond easily to routine questions, which are ingrained in them e.g. “How are you today?”
Be embarrassed when they cannot complete a sentence.
Individuals with dementia-related communication impairments are often perceived by others as uncooperative and stubborn when in reality, they may simply be unable to understand the conversation or instructions. Caregivers often expect too much from a person with memory loss and may not realize that their loved one’s ability to communicate may fluctuate from day to day and even over the course of a day. It may be more difficult for them in the early evenings (after 4 pm). People with communication impairments often have their feelings overlooked. This is especially true for individuals who can no longer communicate verbally.
There is a variety of strategies that can enhance communication with someone who has dementia:
Gain the listener’s attention
Maintain eye contact, pay attention to facial expressions and tone of voice
Don’t cover your mouth
Use simple words
Give one-step directions
Ask only one question at a time
Be positive and smile
Rephrase rather than repeat
Adapt to your listener
Reduce background noise
Use gentle touch to reassure and guide
Do not speak as if the person is a child or not present
Treat the person with dignity and respect
Stress, worry and agitation are feelings that we all experience occasionally. For some people with Alzheimer’s Disease, these feelings can become consuming. Not remembering where one is, what one is expected to be doing or what one will be doing next can be very stressful and disorienting. As a result small, seemingly insignificant concerns can become overwhelming. Since Alzheimer’s can impair a person’s ability to manage emotions, your loved one may need you to step in before worry gets out of hand.
Here are some strategies for responding to anxiety:
Identify the underlying disorientation and respond to it, e.g., when a person is preoccupied with a particular worry about something seemingly innocuous, that worry is masking a more serious fear. For example, a person who is preoccupied with time will structure his or her day according to the time. When your loved one is not reassured by what “o’clock” it is, try responding by orienting him or her to the structure of the day. For example “It is morning now, and after you brush your teeth, we will eat breakfast together. Here is your toothbrush.”
Use distraction. Invariably, it is not possible to alleviate all sources of worry from a person’s life. After taking time to listen and validate your loved-one’s feelings you will need to divert his or her attention away from the preoccupation.
Exercise patience and find a release for your own worries. Being with a person who is anxious can be unsettling and frustrating. Be aware of your feelings and recognize your limitations. Cultivating time for you to de-stress and express emotion is crucial.
Introduce soothing activities. Keeping busy helps reduce agitation. Finding ways to engage your loved one’s senses, challenging the mind and moving the body will help keep anxiety in check.
For caregivers, dealing with a loved-one who constantly repeats him/herself can be irritating and annoying. Dealing with the same behaviour, question, word or phrase, song or poem over and over again will try anybody’s patience. People with Alzheimer’s Disease are repetitious for the simple reason that his or her short term memory is impaired. The repetition may also be a way for the person to self-soothe.
Here are some ways for caregivers to accommodate the behaviour and manage their frustration:
Distraction - Giving your loved one a concrete task can help him or her break out of the repetitive cycle. A new stimulus can help to avert the person’s focus away from the preoccupation.
Make it a game - If you can’t beat ‘em, join ‘em! If your loved one sings a song, try singing along! Use your creativity to find new ways to answer repeated questions – for example, a rhymed answer may allow the question and answer become a ritual, something positive that you and your loved one a share together.
Take a deep breath. When you are stressed your breathing becomes shallow. Taking a deep breath sends the message to your body that it should relax.
Vent your frustration. Talk to a friend, a counsellor or join a support group. Sometimes just expressing your frustration can alleviate it.
Let it go. Try shifting your attitude. Remind yourself that repetition is not harmful. Do not argue. Attempting to teach the person to stop the behaviour will not work and will add to your stress level.
Respite - Recognizing your limitations is important. Your loved one may always be repetitive. Sometimes you will need to get away. Ask a friend or family member to take over for a while. Enrol your loved one in an activity program (eg Alzheimer Groupe’s day program).Provide link to Support Services For longer term respite, apply for a respite bed through your CLSC /CSSS social worker, hire a paid caregiver or contact a community organization that provides respite services (eg Baluchon Alzheimer’s) provide link to www.baluchonalzheimer.com
The conditions inherent in Alzheimer’s Disease contribute to the danger of the person wandering away or becoming lost. Memory deficits make it more likely that the person becomes disoriented, even when in a familiar environment. People with Alzheimer’s wander for a number of reasons. He or she may be searching for something, escaping from something, reliving the past or is simply confused. The person may not be aware that it is no longer safe to leave home alone.
People with Alzheimer’s are often unable to use their own resources to keep safe. He or she may forget their address and may not be able to use the telephone (or remember the number) to call a caregiver if lost. They may not understand a map or bus route. They may not even be able to distinguish whether they are too hot or too cold and, therefore may dress inappropriately for the weather, putting themselves at risk from exposure to the elements.
Here are some strategies for reducing wandering behaviour:
Check to see if the person is hungry, needs to go to the bathroom or feels uncomfortable.
Encourage movement and exercise to reduce anxiety and restlessness.
Involve the person in daily activities such as folding laundry or preparing a meal.
Reasure the person that you know where to find him or her and that he or she is in the right place.
Reduce noise levels and confusion.
Reassure the person who may feel lost, abandoned or disoriented.
Place locks in less visible places on doors and windows. Consider door and window alarms or buzzers, or pressure sensitive mats.
Alert police ahead of time that you care for a person with dementia.
Register your loved one in the Alzheimer Society’s Safely Home Program. Safely Home provides identification bracelets to memory impaired individuals. These bracelets alert others that the person may need assistance and has the Safely Home 24-hour crisis number. Your Alzheimer Groupe (A.G.I.) Inc. counsellor can provide the forms and information on the program, as well as strategies for encouraging your loved one to wear the bracelet.
Safety Guidelines if the person wanders:
In some instances, the person will continue to wander off no matter what you do to try to prevent it. In cases like these ensure that you have taken the following safety precautions:
Make sure the person is properly dressed for the climate. Have the person dress in bright colours if possible.
Put identification in pockets of the clothing (contact name, address, phone number)
Notify the police that the person has wandered off. Inform them of familiar walking routes, former neighbours, etc.
Keep an updated picture of the person available at all times with a detailed description of him or her (age, height, hair colour, identifying marks).
One symptom of Alzheimer’s Disease which is rarely spoken about is sexually inappropriate behaviour (i.e. undressing, touching, and comments). This can be extremely embarrassing for the family. It is important to remember that every person has a human need to be touched. Even though the person has a disease, he or she still has the desire for affection.
Other possible reasons for inappropriate sexual behaviour include:
Decreased judgment and social awareness
Misinterpreting the caregiver’s interaction
Uncomfortable clothing (i.e. too warm, clothing is too tight, genital irritation)
Need for attention, affection, intimacy
Self-stimulating, reacting to what feels good
Need to use the bathroom and has forgotten where it is.
When the person is sexually inappropriate, it is important not to overreact to the situation. The person does not recognize that what he or she is doing is inappropriate. Calmly respond to the person and redirect his or her attention towards another activity. Check the room temperature and assess the person’s needs. Be sure to check for medical problems and respond accordingly. Provide opportunities for tactile stimulation which is a basic human need (eg pet therapy, a massage, a hug, etc).
Caregivers often find it difficult to talk to friends and family about these behaviours. If you need guidance or support, speak to a professional counsellor. They are familiar with these situations and are there to help!
Taking care of a loved one with Alzheimer’s Disease is stressful.
(Source: ex. health.usnews.com 12/18/06 April 2009)
The symptoms of caregiver burnout are similar to the symptoms of stress and depression. They include:
Withdrawal from friends, family and other loved ones
Loss of interest in activities previously enjoyed
Feeling blue, irritable, hopeless and helpless
Changes in appetite, weight or both
Changes in sleep patterns
Getting sick more often
Feelings of wanting to hurt oneself or the patient being cared for
Emotional and physical exhaustion
Take a break – admit when you are upset.
Let it go.
Talk with someone to express your feelings and seek advice.
Laugh - Look at the lighter side!
Know that misplaced items will turn up.
Use calendars, watches and daily lists as memory aids.
Take away the pressure of rushing.
Be patient with yourself.
Don’t give up – allow more time to accomplish things.
Have kinder, more realistic expectations of yourself.
Acknowledge that things have changed.
Just do the best you can!