How to Look after your Alzheimer’s Parents

Sailesh MishraFounder President ,Silver Inning Foundation

Hon. Secretary ARDSI, Mumbai

HELP Library:3rd April 2009

What is Dementia

Dementia is a progressive brain dysfunction (in Latin 'dementia' means irrationality), which results in a restriction of daily activities and in most cases leads in the long term to the need for care.

There are many forms of dementia, the most common one being Alzheimer's disease.

What is Alzheimer's

Alzheimer’s disease (AD) is a silent killer of brain and lives of world’s elderly people. It is the fourth leading cause of death among the older adults in the developed world. The symptoms can broadly include difficulties with language, significant short-term memory loss, time disorientation, difficulty in making decisions, showing signs of depression and aggression and lack of initiative and motivation.

Dr Aloes Alzheimer, a German doctor, in 1906 discovered Alzheimer's

What is Alzheimer's……

Alzheimer’s knows no social, economic, ethnic or geographical boundaries and affects people throughout the world

Every 72 seconds someone develops Alzheimer’s and recent AD statistics have shown that approx 1 in 10 people over the age of 65 yrs and 1 in 2 over 85 years suffer from this condition.

There is no Cure ,some treatment available to stabilize and arrest the progress

How Brain looks if there is Alzheimer’s

Cause

AGE…..over 65 years and more than 50% in over 85 yr. FAMILY HISTORY VASCULAR DISEASE (high BP, high cholesterol) STROKE MODERN LIFESTYLE OBESITY SMOKING /TOBACCO EXCESS ALCOHOL, COFFEE HEAD INJURIES (dementia pugilist) TOXINS- aluminum INFECTION (viruses) DEFICIENCY OF Vitamin A,C,E,B6,B12,carotenoids,zinc,selenium SOCIAL INACTIVE

Symptoms : Early Stage

In the early stages, the symptoms of AD may be subtle a resemble signs that people mistakenly attribute to "natural aging."

Symptoms often include: Repeating statements Misplacing items Having trouble finding names

for familiar objects Getting lost on familiar routes Personality changes Losing interest in things previously enjoyed Difficulty performing tasks that take some thought, but used to come

easily, like balancing a checkbook, playing complex games (such as bridge), and learning new information or routines

Symptoms : Advance Stage

In a more advanced stage, symptoms are more obvious:

Forgetting details about current events Forgetting events in your own life history, losing

awareness of who you are Problems choosing proper clothing Hallucinations, arguments, striking out, and violent

behavior Delusions, depression, agitation Difficulty performing basic tasks like preparing meals and

driving

If your parents have Alzheimer’s

If you find any of the earlier Symptoms then there is warning sign

Contact the Doctor : Neurologist /Psychiatrist /Memory Clinics – For assessment :MMSE and other test

Contact NGO :ARDSI, Silver Inning Foundation/Dignity – for Counseling

Understand the Disease

Understand the diseases , ACCEPT ITKnow the fact – some are reversible (in

early stage) but it cant be curedIt can happen to any oneRemember person is not mad, it is brain

diseaseThe person is not doing things purposely,

he does not have controlIts FULL TIME care – Long term care

Things to remember

Alzheimer's Disease can cause a person to show behavior that they normally wouldn’t. This means that you, as a caregiver, will be faced with many challenges as you try to give your the best care that you can.

Some of the challenges that you may face include physical aggression, verbal aggression, mood swings, wandering, repetition of words, and combativeness

All of these changes in behavior can lead to a great deal of tension and frustrations for both you and your patient. The most important thing that you need to remember is that your Alzheimer's parent isn’t behaving this way on purpose. Their behavior is simply the result of their disease so you need avoid analyzing the situation and looking for solutions when there are none.

What you can do

Make them independent till they can Give Medicine in time Develop proper timetable for daily chores Keep house clean and maintain hygiene Educate your neighbor and relatives Don’t be rigid , be flexible Share responsibility of care taking or appoint professional care taker See that the professional care taker are not given other household

work Avoid Sharp edges in house Good Security system Give ID card / monitoring device Don’t change living environment Respect them

Best Care Giving Module

Dignity of the person is the first principle to maintain. This means to allow the person with dementia to maintain as much independence that is realistic for their abilities including maintaining dignity through doing one's own personal care when able; through choice of activities; and through choice of relationships that are satisfying.

Safety of the person is the second principle. This means ensuring that the caregiver monitors to protect the person from self-harm or from the actions of others who may not have the person's best interests at heart. In addition, providing reasonable safety includes making changes in the home environment to reduce the potential for injury.

Best Care Giving Module……

Quality of care: When services are arranged, it is essential that the care providers are knowledgeable about dementia care. Care must be delivered in a timely fashion to address immediate needs. Care must also be consistently provided to ensure appropriateness for maintaining optimal health of the person with dementia

Planning for comprehensive care: The family caregiver needs to obtain an assessment of the total needs of the person needing care. Planning includes obtaining understanding about advance directives, such as implementing a health care proxy instrument. Comprehensive planning requires the caregiver to take an inventory of resources that include informal and formal supports, personal financial capacity, and determination of eligibility for community programs.

Best Care Giving Module……

Balance by and for the caregiver is important. Balancing needs and resources requires consideration of balancing of the available time in the day's routine to address both the person and caregiver needs. Developing a balance of servicing between the primary caregiver and other family members is important to sharing the responsibilities. Further, acceptance of a balance to blend family help and outside community supports is needed to sustain the primary caregiver's ability to cope.

Relationship between the caregiver and the person with dementia should be preserved. The ultimate purpose of the caregiving experience is to sustain and enhance the relationship between the caregiver and the person. While the person with progressive dementia will increasingly be unable to express appreciation for the care received, there can still be moments in advanced stages for such expression to occur. The caregiver's willingness comes through as compassionate care in recognition and in honor of the relationship. When this happens, the care giving relationship allows both people to give loving kindness to each other.

How to Communicate

When we speak to someone with AD, say messages which they can understand.

Make sure person paying attention to you. Eye contact is important. Gently touching and calling a persons name can draw his or her attention.

Keep sentences short and simple. Do not Argue / Obstruct Make one point at a time Stick to simple familiar ideas. Make statements and not logical

arguments. Say exactly what you mean, avoid suggested or implied

messages. Use real names While talking don’t make other distractive things.

How to Communicate……

Holding hands, hugging or just sitting companionably is an important way to communicate.

If repeating things over and over again, best to distract.

Ask person to point out things if cannot describe Person may not take in info easily. So repeat imp points Remove background noises. Do not talk about person with AD in his or her

presence. Person will understand body language and gestures if not speech.

People with AD can communicate best when relaxed/ Try to appear relaxed yourself. If you are tired, you send nonverbal messages that might upset impaired person.

Be P.O.L.I.T.E

Polite- PatienceOrganise and Observe for signsLaugh. Cheerfulness can help in difficult

moments.Ignore. Do not correct other person if what

he is doing is not unhealthy/harmful.Tone of voice importantEye contact necessary.

Activity the best medicine

Goal of activity is to minimize behavioural damage and sustain being a person

Goal of activity is also to restore sense of purpose, identity and control. It makes familiar tasks possible. Helps impaired person feel good about himself or herself.

Strong evidence that these positive experiences reduce man behavioural problems.

Activity for a person with dementia is anything a person does- Activities can include toileting, enjoying an old joke, watching TV, putting on a jacket.

Activity is responsibility of everyone involved in the person’s care.

Characteristics of structured activities is that they are familiar and they allow a person to feel successful

Activity the best medicine…..

Task should not be something new but which the person has performed many times. Eg chopping vegs, wiping tables, sweeping floor.

Strongest attraction for persons with dementia is to succeed, to have chance to shine.

Each individual different and today will not be like tomorrow. But folks need to be engaged in some activity every half an hour.

Activity should be suited to the cognitive level. It should not frustrate the impaired person.

15 minute model which means a task which occupies a person for 15 mins can be considered successful.

Types of activity

Orientation to time and place can be exhibited on a piece of paper Word games (5 words from d, e) Tongue twisters (Chandu ke chachi ne) Participants should be encouraged to

make mistakes. Occupation naming (what does a sailor do, blacksmith do) Completing phrases (Laughter is best medicine) Slogans Naming famous couples Quizzes on Mahabharata and Ramayana Discussing TV shows SODUKU Relating short motivating stories Exercise Walking Listerning to songs together Singing with person/ Reminiscences (Encouraging person to share past memories) Taking pictures from camera Life stories Watering plants/ Gardening

Alternate Therapy

Music : It is a powerful tool of life as different music or tunes can bring back memories of different occasions & experiences.

Therapeutic Touch : IN THIS TECHNIQUE HANDS DO NOT TOUCH THE PERSON BUT ARE SENSITIVE TO THE PERSONS AURA, OR ENERGY FIELDS SURROUNDING THE BODY

Massage :Relaxes the mind & can induce deep states of relaxation and expanded awareness.

Reiki : IT IS A HANDS ON HEALING TECHNIQUE ACCUPRESSURE / REFLEXOLOGY

Coping strategies

Try to be as understanding as you can. Keep in mind that behavior changes are not directed at you personally but are a symptom of Alzheimer's Disease

Stay calm no matter what the situation is about. Practice as much patience as you can. If you start to feel impatient, try to

take a step back and take a few minutes for yourself so that you can get back on track - Meditation

Be flexible so that no matter what type of a schedule you have designed for your patient you are always ready for the unexpected.

Don’t argue with your patient or try to convince them of something. Always keep in mind that the Alzheimer's patient is no longer able to rationalize in the way that they once were

Respond to your patient when they ask something of you. It will be up to you to determine whether or not the request is rational or not.

Take care of yourself Take leave – go for shopping, movie, outing Smile

Conclusion for better Care management

Try to establish a routine. Allow the person with dementia to retain some independence. Protect his/her dignity. Try to involve him/her in as many activities as possible. Avoid confrontation whenever possible. Keep tasks simple. Maintain a sense of humour. Make sure your home is as safe as possible. Encourage the person with dementia to take exercise. Help to make the best of the affected person's existing abilities. Remember problems are due to the disease, and not the person. Remain flexible: dementia is a progressive illness and you will

have to adapt to changes that occur over time.

Your Support

ARDSI - Alzheimer’s & Related Disorders Society of India :23742479

Dignity Foundation:23898078 Silver Inning Foundation:9987104233ARDSI Greater Mumbai Support

Group:9819819145Memory Solution : 9930004053Memory Clinic : Nair Hospital ,Holy

Family , Sion Hospital

Dear son/daughter...

The day that you see me old, have patience and try to understand me….

When at some moment I lose my memory or the thread of our conversation… let me have the necessary time to remember… and if I cannot do it, do not become nervous… as the most important thing is not my conversation but surely to be with you and to have you listening to me…

Love ,Care and Respect will give them Dignity and Life

Remember Those who Cannot Remember

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