Advocate for non-pharmacological approaches to helping those with dementia

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by Dr. John Zeisel

Dear Mr. President,
Please appoint a champion of non-pharmacological Alzheimer's treatment to the National Advisory Panel on Alzheimer's that you recently established pursuant to the National Alzheimer's Project Act.
Current medications can slow the advance of Alzheimer's disease in some people, but offer no hope of a cure for the estimated 5.5 million people with Alzheimer's or other dementias in the U.S. today, for the many millions more who will soon receive an early diagnosis of dementia, or for the even greater number of people who love and care for them.
Mr. President, like most Americans, you probably know and love someone with dementia and you undoubtedly want a cure to be found for this horrible disease. But do you know that if a drug were discovered today it will not improve the lives of those with dementia now or of those who will soon develop it?
Drug development for dementia has hit a brick wall. The National Institutes of Health Consensus report states: "Currently, no evidence of even moderate scientific quality exists to support the association of any modifiable factor (such as nutritional supplements, herbal preparations, dietary factors, prescription or nonprescription drugs, social or economic factors, medical conditions, toxins, or environmental exposures) with reduced risk of Alzheimer's disease."
The new national policy initiative for early diagnosis will do nothing for the millions of Americans with dementia and those who love them -- unless we can give them a life worth living. The hope to diagnose people earlier, long before there are any symptoms is just that -- a hope -- for our children and their children, but not for anyone with Alzheimer's today. Drugs can't give people with dementia a life worth living. Non-pharmacological interventions can!
The New York Times published an article several months ago about a program at a small nursing home in Arizona that amazingly allows people with dementia freedom to do what gives them pleasure -- even eat chocolate! Readers overwhelmingly responded with joy that in this one case rather than being locked up, stigmatized, and denied their human rights, residents with dementia were treated like people.
We as a society need to make this a reality for all elders, even those who happen to be living with dementia, giving all of them the opportunity to make decisions and to have a dignified and fulfilling life. We as a society need to provide all those with Alzheimer's a life worth living. Drugs alone can't do that. Non-pharmacological approaches can.
New approaches to giving people with dementia access to their communities are emerging. Movie theaters and museums, for example, are opening their doors and providing special programs for people with even advanced Alzheimer's disease. New books are being published about how to engage people with dementia in lives they find satisfying, offering realistic hope for people living with Alzheimer's.
People from all walks of life and professions are crying out: Please do not condemn people already living with Alzheimer's to a life locked up at home or in an assisted living program or in a nursing home. Please give them the access to society they deserve -- give them their human rights -- by investing in non-pharmacological approaches and not just drugs.
I recently circulated a petition to leaders in the field requesting that the National Advisory Panel include an expert who will champion non-pharmacological treatments for dementia. I want that this paradigm be considered seriously by the panel, that the panel promote evidence-based non-pharmacological practice, that research methodologies and methods be included that can capture the effects of these interventions on people with dementia, and that the human rights of both those living with dementia and caregivers be respected. The petition argues that the ethical dilemma of early diagnosis without any medical solution can be resolved through active application of the non-pharmacological approach.
The response was overwhelming in terms of numbers and professional positions of signers.
Let me be clear that we do not oppose research to find drugs that will cure Alzheimer's and other dementias. On the contrary, we hope that new discoveries will be made in time to help our children and our children's children.
But for those suffering now and for the generation of baby boomers, please join us to promote dignity in the lives of people with dementia, reduce the stigma and fear that surrounds Alzheimer's and other dementias, and give hope to the millions of people with dementia today and those who love and care for them.
Mr. President, please heed this call to appoint a champion of non-pharmacological treatments for dementia to your National Advisory Panel on Alzheimer's.
Here is the link to sign the petition to have a champion of nonpharmacological treatments for Alzheimer's appointed to the National Advisory Panel on Alzheimer's of the National Alzheimer's Project Act.

How to become more optimistic

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About.com

Optimists enjoy many health and lifestyle benefits, and tend to be happier overall. Optimism is measured by your explanatory style, or how you define events. If you can learn to define positive events as being a) because of something you did, b) a sign of more good things to come and c) evidence that good things will happen in other areas of your life, you’re halfway there. If you can also think of negative events as a) not your fault, and b) isolated occurrences that have no bearing on future events or other areas of your life, you’re the rest of the way there! (Are you an optimist? Take the Optimism Quiz and see!)

Quiz

1. When something positive happens in your life, stop to analyze your thought process for a moment. Are you giving yourself due credit for making it happen? Think of all the strengths you possess and ways you contributed, both directly and indirectly, to make this event occur. For example, if you aced a test, don’t just think of how great it is that you were prepared, but also think of how your intelligence and dedication played a role.
2. Think of other areas of your life that could be affected by this good event. Also, think of how the strengths you possess that caused this good thing to happen can also cause other positive events in your life. For example, what other good things can come from your intelligence, dedication, and ability to effectively prepare for tasks?
3. Imagine what future possibilities could be in store. Because you hold the key to your success, shouldn’t you expect to do well on future tests? Isn’t a successful career a natural result?
4. When negative events occur, think of the extenuating circumstances that could have contributed to this happening. If you do poorly on an exam, for example, were you especially busy in the preceding week? Were you somewhat sleep deprived? What outside circumstances contributed to your failure? Keep in mind that this isn’t necessarily a reflection of personal weakness.
5. Also remember that you’ll have endless opportunities to do better in the future. Think of your next potential success, or other areas where you can excel.

Tips:

1. The key to optimism is to maximize your successes and minimize your failures.
2. It’s beneficial to look honestly at your shortcomings so you can work on them, but focusing on your strengths can never hurt.
3. Keep in mind that the more you practice challenging your thought patterns, the more automatic it'll become. Don't expect major changes in thinking right away, but do expect them to become ingrained over time.
4. Always remember that virtually any failure can be a learning experience, and an important step toward your next success!
5. Practice positive affirmations. They really work!

What You Need:

• A willingness to examine your thoughts.
• A few extra minutes to consistently reexamine your thought patterns.

Optimism protects against stroke

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Medscape Today

A recent study shows:

Here are the highlights

• Study data were drawn from the Health and Retirement Study, which surveyed more than 22,000 people in the United States every 2 years. Study participants were older than 50 years.
• Study participants were queried regarding psychological status in 2006, and the main outcome of the current study was incident stroke by the end of the study period in 2008. Nonfatal stroke was determined by self-report from participants, and fatal stroke was reported by proxy designees of the study participant. Previous research found excellent validity between the self-reported health data and the medical record in the current cohort.
• Optimism was measured with the Life Orientation Test–Revised. This testing resulted in a score of 3 to 18, with higher scores indicating higher levels of optimism.
• The study analysis focused on the effect of optimism on the risk for stroke. This result was adjusted to account for demographic, medical, and other psychological symptoms.
• 6044 adults provided data for the current study. The mean age was 68.5 years, 58% of participants were women, 79% were white, and 12% were black.
• The mean score for optimism was 13.57.
• There were 88 cases of stroke during the 2-year follow-up period.
• Each 1-point increase in the optimism score was associated with an adjusted odds ratio of 0.91 for incident stroke (95% confidence interval, 0.85 - 0.98).
• Anxiety, depression, neuroticism, negative affect, and pessimism also were associated with an increased risk for stroke. However, cynical hostility and pessimism were not.
• These psychological factors did not significantly interfere with the effect of optimism on the risk for stroke. Optimism reduced the risk for stroke beyond any improvement with a positive affect alone.

Optimistic Attitude May Protect Against Stroke Risk in Older Adults

• A previous study of the Women's Health Initiative cohort found that optimism was associated with lower rates of total mortality as well as lower incidence rates of coronary heart disease. Among black women, optimism reduced the risk for mortality from cancer.
• The current study suggests that increasing optimism can have a linear effect in reducing the risk for stroke among older adults, regardless of other psychological symptoms.

Since many of the clients or residents you deal with fall into this category, it is important for you to keep them as happy and optimistic as possible

Come back soon for ways to do this

Managing problem behavior with those who have dementia

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Inquirer Lifestyle

Alfredo Torres, OTRP, chief occupational therapist of the National Center for Mental Health, has provided a list of behavioral and psychological symptoms of dementia and tips on how caregivers can deal with them.
Anger and Aggression
Assure the angry individual that they’re alright, and that you understand that they can’t help themselves.
Be prepared to receive insults and verbal abuse.
Speak in a well-modulated voice.
Offer food or drink (it is difficult to eat and be angry at the same time).
Sit or stand a little to the side some four to five feet away rather than facing them directly to appear less intimidating
Confusion
Provide a night light to help them see and locate familiar things, prevent falls in the dark and protect against wandering.
Encourage reminiscence.  Gently assist them with keeping facts reasonably accurate and related to the past
Use communication techniques rich in reminders, cues, gestures and physical guide to increase personal awareness.
Provide them personal space filled with familiar things where they can  rest and feel safe and secure.
Ask permission if something must be moved or changed to establish feelings of trust and control.
Hoarding, rummaging behavior
Ignore the behavior if it’s not particularly troublesome or unsafe.
Clean out the person’s collection but leave a few items behind.
Learn the person’s hiding places.
Provide a box or private space that is theirs alone to keep things in.
Sundowner’s syndrome
Set up a rigid daily schedule to reduce their anxiety about what happens next
Alternate activity with programmed rest.
Reduce all stimuli during rest periods.
Prepare the impaired person for special events so they don’t come as a shock.
Suspicion, distrust
Avoid grand gestures and promises that cannot be carried out.
Do not argue about or rationally explain disappearances of the person’s possessions.
Offer to look for items they say  is missing.
Depression
Try to rebuild self-esteem through reminiscence, participation in activities and decisions.
Notice pictures and mementos. Ask about them and listen.
Spend time with them.  Do not ignore quiet, uncomplaining people.
Alert the person’s doctor; medications may help.
How to Facilitate Interaction with an Individual with Dementia
Approach the person slowly from the front, never behind, and give him or her time to get used to your presence.
Maintain eye contact. A gentle touch may help.
Introduce yourself to them daily and call the person by name. Do not ask “Don’t you remember me?”
Treat them like adults and don’t talk down to them.
When possible, attempt all communication in a calm, relaxed and quiet environment using your natural voice. Shouting only agitates them.
Try and talk about feelings rather than arguing over facts.
Invite an individual to an activity using gentle assertion rather than a question that may be easily refused.
Give short simple directions.  Do not overwhelm them with too much information at once.Repeat or rephrase if they don’t understand you right away
Do not rush them. Allow them enough time to answer questions, follow directions and express themselves at a pace they choose and find most comfortable.
Reduce distractions in the environment and tone down radio and TV sets
Too many people in the room can be over-stimulating for them.
If the impaired person seems frustrated and temperamental and you don’t know what he or she wants, try to ask simple questions answerable by “yes” or “no.”

Poetry can stir memories in those with dementia

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Wisconson State Journal

Poetry touches a deep place in the human psyche — and that might be what makes Alzheimer's Poetry Day work.

"With dementia, you might have people who might not recognize a grandchild who comes to visit," said Gary Glazner, a Brooklyn-based poet and founder of the national Alzheimer's Poetry Project. "But through doing poems with them, you can have this kind of connection with them that is so strong and so powerful. As our population ages, it's going to be more and more needed."
Glazner developed the Alzheimer's Poetry Project after working with dementia patients in 1997 in Northern California.
"I didn't know very much about Alzheimer's or dementia, but I hit upon the idea of using classic poems that they might have learned as kids," he said.

"In a workshop, the real moment of inspiration for me came from a man who was in the group. His head was down, he wasn't participating at all, and I would say he was completely unaware of his surroundings. I said a line from a Longfellow poem: ‘I shot an arrow in the air.' The man's eyes popped open and he said, ‘It fell to earth; I know not where.'
"And suddenly he was participating, he was back with us. It was a real heartfelt moment for me as a poet," he said.
Glazner has been conducting poetry workshops at assisted-living and adult day care centers in Wisconsin for the past two years through a grant from the Helen Bader Foundation in Milwaukee.

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Reminiscing and dementia

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What is reminiscing?

Reminiscing Manual version 1,

The benefits of reminiscing

Someone with dementia may only give you a small piece of themselves – all

there is, and enough, at that moment. That small piece is precious and may

become a strand or thread woven into your life as well. The fragments may,

like the creation of a mosaic, gradually be pieced together and something new

is created (Coaten, 2001, p 21).

Outcomes for the older person: one-on-one

When reminiscing celebrate the richness of life experience, allowing in the

process and the voice of the person to be communicated, however it is

expressed (Coaten, 2001, p19).

Involving an older person in reminiscing has many benefits for that person.

Some of these benefits are:

•

Increase the ability to communicate and practice self expression.

•

Increase social interaction through the sharing of experiences.

•

Increase feelings of belonging and togetherness.

•

person.

Emphasise the individual identity and unique experiences of each

•

their experiences.

Allow the older people to take on a teaching role through the sharing of

•

Help people to come to terms with growing older.

•

times.

Encourage older people to regain interest in past hobbies and past

•

Encourage creativity.

•

Increase self worth and provide a sense of achievement.

•

people.

Reduce apathy and confusion, especially in confused or disorientated

•

(St George Museum, 2004, pp 4-5)

Alleviate depression.

•

Increasing life satisfaction.

•

Improving self-care.

•

(Jones, 2003, p 27)

Helping older people deal with crisis, losses and life transitions.

•

(Wareing, 2000, p 22)

Meeting psychological and emotional needs.

•

interaction.

(Spencer and Joyce, 2000, p 20)

Involvement in a meaningful and pleasurable activity and positive

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Reminiscing Manual version 1,

Outcomes for the older person in a group

There are some unique outcomes for people who participate in reminiscing as

part of a group. Some of these outcomes are:

•

individual member and of the personal effectiveness and significant

contribution of each participant

Increase awareness among group members of the uniqueness of each

•

and concerns

Increase realisation that other group members may share similar problems

•

 

•

and achievements

Gain knowledge and understanding about the older person’s life, history

•

behaviour

Find links between the older person’s past experience and present

•

understanding more about a person can facilitate more meaningful contact

Assist the relationship between older people and their carers, as• Provide.....more next time

Benefits for the carer, family and volunteer

Reminiscing not only benefits the older person but the carer, family member

and volunteer who may be engaging the older person in the activity. Some of

these benefits are:

Increase the sense of belonging and acceptance by the group

Sometimes we remember because our memories have been triggered

involuntarily by a favourite song or tune and sometimes we remember on

purpose. Reminiscing gives us a pleasure and a sense of relatedness and

connection with what has gone before (Coaten, 2001, p 19).

Reminiscence allows us to relive events from our past. It is a process which

focuses on the personal way we experience and remember events, rather

than on chronological or historical accuracy. When we reminisce we don’t

simply recall random events in a cold factual way. With reminiscing we are

able to relive the experiences that are personal to us in a way that is vivid and

engaging.

Reminiscing encourages older people to become actively involved in reliving

and sharing their past with others. Although reminiscence involves recalling

past events it encourages the elderly to communicate and interact with a

listener in the present. Reminiscence groups can operate on different levels.

Groups can be run with older people and with a range of competencies

including those who are confused.

As a recreational activity reminiscence can provide occupational and leisure

activities for older people. As a means of psychological support reminiscence

is aimed at generating self-esteem and the expression of individual identity.

Reminiscence can also be used as a therapeutic tool to aid the life review

process.

Reminiscing kits can contain items from the past that will be of significance to

the lives of elderly people. Interaction with objects from the past is an

important way of stimulating responses and can provide a focus for the

recollection of deeply embedded memories. As memories can be triggered by

a variety of different senses people will respond to the objects differently. The

use of objects as prompts for memories is especially useful when working with

people who have dementia.

(St George Museum, 2004, pp2-3)

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Reminiscing with a group of persons with dementia

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Benevolant Society

•

Group numbers should be small. Let the following be a guide:

o

have dementia.

No more than 8 or 10 when working with older people who do not

o

moderate stages of dementia.

No more than 6 when involving older people who have early to

o

advanced dementia.

No more than 3 when working with older people who have

•

•

o

reminisce and communicate well.

An appropriate group size allows objects to be circulated rapidly to Session times may vary depending on the group. Let the following be a Up to 45 mins when working with a group of people who can

o

dementia.

20 to 30 mins with a group who may be in moderate stage of

o

Small pockets of time for people with advanced dementia.

•

make people feel at ease.

Quiet, intimate and comfortable surroundings are important in order to

•

Placing seats close together helps promote an intimate atmosphere.

•

• It is important not to use too many objects per session, as this can Select up to 6 objects that you feel are most appropriate for the group.

•

.

As facilitator it is important to do as much listening and as little talking as

•

•

•

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It is important to ask open ended questions that require more than yes or Its is important to keep track of who has not spoken in the session. As a Don’t be concerned if the discussion leads to subjects beyond the theme Reminiscing Manual version 1,

Suggestions for group work

Some extra tips for group reminiscing are:

•

Use a room where the participants will feel comfortable and able to talk.

•

participants to hear others.

Seating in semi circle allows for easy passing of objects and for

•

considered as women’s work.

Men can be encouraged to discuss topics which have traditionally been

•

people but be careful not to offend or disregard anyone’s personal

experience.

Use the opportunity to hear different versions of an event form different

•

insights into each object or experience.

Use the differences within the group, such as age, to obtain greater

•

Introduce the topic and then gradually pass the items around.

•

remember while others will speak up quickly and often.

Allow plenty of time for discussion. Some people may need time to

•

accommodate spontaneity.The groups need some structure however allow sufficient flexibility to

Reminiscing with Groups

When holding a group reminiscence keep the following in mind:

Reminiscing and dementia:The five senses

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Benevolant Society

Hearing Sight Smell Taste Touch

Some older people may no longer have the ability to explain or express their

thoughts through words. Reminiscing is much more then simply talking about

a memory. Reminiscing can involve all the senses.

For people with cognitive impairment and difficulties in communicating

verbally the opportunities offered by a different, non verbal, way of

communicating may be of great importance (Coaten, 2001, p 21).

Providing sensory stimulation through sound, movement, dance, rhythm, beat,

smell, changes in light and colour, objects, tactile surfaces, materials,

vibration, food and experiencing flavour can provide vivid and strong

reminiscence.

The persons ability to derive pleasure from the use of some or all of the five

senses is an important strength. Many activities can involve some sort of

sensory stimulation which helps to engage the person with advanced

dementia in a pleasurable activity (Spencer and Joyce,2000, p 18).

Activities mediated through visual and tactile modes can help the person with

dementia in orientation, in feeling safe and in both stimulation and enjoyment

(Armstrong and Wright, 2002, p 19).

The importance of hearing and ‘touch’

•

thus hearing is a major sense.

Hearing is one of the last senses to go as an older person looses abilities,

•

non verbal types of communication that can be fully perceived.

Deterioration of other senses can result in touch being the one of the only

•

This can result in a loss of reality.

If elderly people are not touched they can lose touch with the environment.

•

their hand and talks to them.

An agitated older person will often relax when someone sits and holds

•

be faked. So… what is communicated if we do not touch?

(Boney, 1994, pp 26-27)

Touch conveys attitudes and feelings. Touch is something which cannot

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Reminiscing Manual version 1,

When reminiscing brings up difficult, sad or

distressing emotions

Not all memories are positive so it is important to ‘check in’ with the person

throughout the reminiscing experience. Keep the following in mind:

•

not necessarily a bad thing. Sometimes it is OK for the person explore

their feelings and for these feelings to be acknowledged.

If an older person starts remembering a sad or difficult time in their life it is

•

These experiences are just as important as happy ones, so don’t feel that

you need to steer discussion on to a happier topic unless it is clear that the

person or group is becoming distressed. Sometimes reminiscence can

lead to feelings of depression and may require one to one follow up (St

George Museum, 2004, pp 6-7).

Often sad experiences will be recalled as part of reminiscence therapy.

•

When painful emotions arise and the group has difficulty in dealing with it,

the leader should intervene or advice should be sought from staff and

family (Museum Victoria, 1995, p3).

Environments should be supportive and confrontations should be avoided.

Engaging a person in a reminiscing session

Reminiscing one-on-one

•

reminiscing session:

It is important to gain the attention of the person you will be with during the

o

Be physically at the same level with the older person.

o

Make eye contact if possible.

o

reminiscing objects in a place the person will be able to see as this

will help to make a connection.

If eye contact is not possible be sure to have your hand or the

o

them through touch, movement, talking or possibly move them to an

area where there will be a difference in light.

If the person has a sight impairment let them know you are with

•

are minimal distractions and where you will not be interrupted.

Always use a space where the person can feel comfortable, where there

•

Use the following methods for an introduction:

o

told you on a previous reminiscence or use an object they reacted

well to previously.

Introduce yourself and possibly mention something the person has

o

theme.

Give the person a clear introduction to the reminiscing session and

•

they are comfortable with.

Don’t rush the person. Allow time for them to communicate in a way that

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Reminiscing Manual version 1,

•

channels but probably more powerful. Look for the following:

Look for non verbal cues as they are often more subtle than verbal

o

Watch for facial expressions.

o

Is the person looking?

o

Is the person adding a gesture?

•

time.

If using objects from a reminiscing kit hand the person an object one at a

•

objects for a long time whilst others for only a short time.

Keep to the pace of the older person. Some people will keep interest in

•

and that the person knows the reminiscing is coming to an end (Armstrong

and Wright, 2002, p18).

When closing the reminiscence make sure the activity has a formal ending

•

memory. If someone is thinking about a sad or distressing memory keep

the following in mind:

Check that the older person is not left thinking about a sad or distressing

o

‘Walk’ the person out of that memory onto another.

o

genuine.

Acknowledge how the person is feeling, that their emotions are

o

(Armstrong and Wright, 2002, p18)

Stay with the person a little longer if time permits.

Tips for successful conversation

Keep the following in mind for clear communication:

•

they often work better e.g.

Don’t ask specific questions that are closed ask open ended questions as

o

‘How are you getting on?’

o

advanced dementia).

‘Please give me some advice on…” ( not suitable for people with

•

may take a while to get to know the person.

Building up a sense of trust is important. Be realistic and recognise that it

•

conversation flow under the older person’s control wherever possible.

Allow the person with dementia to set the agenda. Let the topic of

•

older person time to speak. What may seem like an uncomfortable, silent

wait for us can allow the older person time to gather their thoughts and

respondBe a good listener. Listening means learning to stop, wait and allow the

The five senses