Clinique Psychologique de la maladie d Alzheimer

1. Clinique Psychologique de la maladie d’Alzheimer

2. Il s’agit d’aborder les aspects spécifiques de la relation aux malades atteints de la maladie d’Alzheimer. Il s’agit d’une formation courte (une journée), éventuellement complémentaire de celle intitulée « La dépendance et le vieillissement et qui peut également être complétée par une approche neurologique et médicale : Me consulter 

3. Dans le contexte psychologique, seront abordées les questions de la sémiologie des troubles, des problèmes de communication, (dépendant et du langage et de la mémoire), communication, des troubles de l’humeur, de l’instabilité, des expressions délirantes, etc.… La formation visera à aider le personnel qui est confronté à ces patients à mieux les comprendre, à mieux cerner comment ces personnes nous perçoivent et perçoivent leur environnement. Ce module s’attachera également à déterminer les conduites à tenir et celles à éviter avec ces patients.

4. Cette formation concerne les professionnels des maisons de retraite ou des services sanitaires de gérontologie, confrontés aux difficultés liées à l’avancée en âge assorties des symptômes de la démence d’Alzheimer.

5. POUR ELABORER ENSEMBLE UN PROGRAMME PRECIS ADAPTÉ A VOS ATTENTES, VEUILLEZ ME CONTACTER

6. La démence dite d’Alzheimer Slide 1 - Levels of Personal Awareness and Alzheimer’s Disease— Role of denial - Denial is a term familiar to most of us. It refers to the human tendency to deny that a painful reality is occurring and act as if all is well in the face of adversity. Denial is a common psychological defense mechanism. It seems reasonable to assume that a person with Alzheimer’s disease (AD) would deny the presence or the severity of his or her symptoms. As we increase our understanding about the subjective experience of AD, we begin to know that denial is less of an issue than we might expect. Instead of denying the presence or severity of symptoms, persons with AD have varying degrees of insight into or awareness of their disease. The damage to the brain itself may be responsible for these varying degrees of awareness. Each person may experience his or her disease in ways contrary to popular thinking. Some people with AD have little or no awareness, while others may have much awareness, and still others may have awareness now and then but do not dwell upon the implications of their disease. Neuropsychologists are just beginning to understand how damage to the frontal lobe of the brain is associated with decreased personal awareness. — No awareness - Some persons with AD seem to always forget that they are forgetful. They have no appreciation of their limitations. They reject offers of help by others since they do not perceive any need. Getting their cooperation with respect to any need for care or oversight is virtually impossible in light of their resistance. They are not really in a state of “denial.” They simply lack insight due to impairment or damage in the brain. — Partial awareness - Most people with AD have some awareness of their deficits, especially when they are put in situations that highlight their problems with memory and thinking. On the other hand, they may not dwell on their problems. The experience of “living in the moment” typifies their outlook. — Much awareness - Those who have a high degree of awareness about their disease appear to be the ones most prone to reactive depression. They may grieve over their past losses and worry about the future in ways that most of us can understand. Fortunately, a minority of people with AD seem acutely aware of the true nature of their cognitive impairments. Slide 1 - Levels of Personal Awareness and Alzheimer’s Disease— Role of denial - Denial is a term familiar to most of us. It refers to the human tendency to deny that a painful reality is occurring and act as if all is well in the face of adversity. Denial is a common psychological defense mechanism. It seems reasonable to assume that a person with Alzheimer’s disease (AD) would deny the presence or the severity of his or her symptoms. As we increase our understanding about the subjective experience of AD, we begin to know that denial is less of an issue than we might expect. Instead of denying the presence or severity of symptoms, persons with AD have varying degrees of insight into or awareness of their disease. The damage to the brain itself may be responsible for these varying degrees of awareness. Each person may experience his or her disease in ways contrary to popular thinking. Some people with AD have little or no awareness, while others may have much awareness, and still others may have awareness now and then but do not dwell upon the implications of their disease. Neuropsychologists are just beginning to understand how damage to the frontal lobe of the brain is associated with decreased personal awareness. — No awareness - Some persons with AD seem to always forget that they are forgetful. They have no appreciation of their limitations. They reject offers of help by others since they do not perceive any need. Getting their cooperation with respect to any need for care or oversight is virtually impossible in light of their resistance. They are not really in a state of “denial.” They simply lack insight due to impairment or damage in the brain. — Partial awareness - Most people with AD have some awareness of their deficits, especially when they are put in situations that highlight their problems with memory and thinking. On the other hand, they may not dwell on their problems. The experience of “living in the moment” typifies their outlook. — Much awareness - Those who have a high degree of awareness about their disease appear to be the ones most prone to reactive depression. They may grieve over their past losses and worry about the future in ways that most of us can understand. Fortunately, a minority of people with AD seem acutely aware of the true nature of their cognitive impairments.

7. PREVALENCE… Apparition surtout après 65 ans (3 à 5% population), mais existe chez personnes plus jeunes (10 % des Malades) Le nombre de personnes atteintes double pour chaque « tranche » de 5 ans d’age 120 000 cas par an Slide 2 - What’s the Fuss Over Autonomy?— Power or right to make one’s own decisions and choose personal preferences - Autonomy is something that every adult is expected to exercise but AD changes one’s ability to make sound decisions independently. — Recognition of one’s values, history, personhood - Autonomy means making personal choices based on preferences made over the course of one’s life experience. — Loss of autonomy threatens well-being - To take away autonomy or have it taken away is an assault on one’s self-esteem.Slide 2 - What’s the Fuss Over Autonomy?— Power or right to make one’s own decisions and choose personal preferences - Autonomy is something that every adult is expected to exercise but AD changes one’s ability to make sound decisions independently. — Recognition of one’s values, history, personhood - Autonomy means making personal choices based on preferences made over the course of one’s life experience. — Loss of autonomy threatens well-being - To take away autonomy or have it taken away is an assault on one’s self-esteem.

8. Les TROUBLES Amnésie (mémoire) Aphasie (parler et comprendre) Agnosie (reconnaissance des choses) Apraxie (actes comme habillage, réalisation de consignes) Attention (se concentrer, réaliser du “multitaches”) Affects (Gérer les émotions) Anosognosie (conscience de la maladie : évolue dans le temps) Slide 3 - Decision-Making and Alzheimer’s Disease—Competence is presumed - Everyone is entitled to make decisions for oneself unless that power is voluntarily given away or if that power is taken away by court action. Competence is presumed unless there is evidence of inability to care for oneself or manage one’s own affairs.—Capacity depends on a clinical judgment - Personal ability to make sound decisions is compromised by AD but capacity is not an all or nothing proposition. —Full versus partial capacity - Some brain functions may be impaired while others may be preserved, especially in the early stage of the disease. The capacity to comprehend, communicate, form and express a preference changes over the course of the disease. —Standards of capacity differ with associated risks - The ability to choose between two items on a menu carries little risk compared to choosing how to make a series of financial investments. Therefore, standards of capacity must be weighed against the types of decisions being made. Slide 3 - Decision-Making and Alzheimer’s Disease—Competence is presumed - Everyone is entitled to make decisions for oneself unless that power is voluntarily given away or if that power is taken away by court action. Competence is presumed unless there is evidence of inability to care for oneself or manage one’s own affairs.—Capacity depends on a clinical judgment - Personal ability to make sound decisions is compromised by AD but capacity is not an all or nothing proposition. —Full versus partial capacity - Some brain functions may be impaired while others may be preserved, especially in the early stage of the disease. The capacity to comprehend, communicate, form and express a preference changes over the course of the disease. —Standards of capacity differ with associated risks - The ability to choose between two items on a menu carries little risk compared to choosing how to make a series of financial investments. Therefore, standards of capacity must be weighed against the types of decisions being made.

9. AMNESIE Concerne principalement la parole, le vocabulaire (la personne “cherche ses mots”) Sensible aux émotions (« effet laser ») Oubli principalement des faits récents, (meilleure conservation des souvenirs anciens) Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets. Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets.

10. AMNESIE :  autres mémoires “qui tiennent” Mémoire procédurale (savoirs faire) : chant, praxies…) Si “mise en situation” Mémoire des actes mais pas des paroles Mémoire des conditionnements Apprentissage reste possible par répétition Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets. Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets.

11. APHASIE : Difficulté à comprendre et à construire les phrases, à trouver les mots Le patient ne comprend pas les phrases longues, et/ou contenant plusieurs idées (ex : aller à table) ERREURS DE MOTS : mot manquant « écart à la cible » : pas le bon mot, mais lien de sens (assiette pour fourchette) description par l’usage (ça sert à) Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets. Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets.

12. AGNOSIE (absence de désignation) Objets Visages (perte de la reconnaissance des personnes) PAR CONTRE : l’identification des mimiques (expression) tient longtemps Exemple « il y a quelqu’un dans ma chambre qui a pris mes vêtements » Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets. Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets.

13. AUTRES TROUBLES Perturbations de l’humeur (anxiété, dépression : 25 % des cas) Instabilité psychomotrice Hallucinations, « délires » Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets. Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets.

14. LES CAUSES ON EN SAIT RIEN, mais on teste des pistes : antécédents familiaux : divers… l’environnement (l’augmentation observée est elle liée à la pollution, l’alimentation ???) La prise de certains médicaments Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets. Slide 4 - Legal Tools to Preserve Autonomy Several legal documents are intended to give voice to one’s wishes. These include: —Wills - Of course, wills apply to matters after one’s death, usually in relation to distribution of one’s assets. Wills have no influence over decisions in one’s lifetime. —Living Wills - Living wills typically apply to end-of-life decisions only and are invoked when a person has less than a six month lifespan. Living wills direct a surrogate decision maker to make certain choices about life sustaining medical decisions, except that living wills often omit language pertaining to artificial nutrition and hydration. Thus, living wills have limited use during one’s lifetime. —Durable Powers of Attorney for Health Care and Property - Durable powers are intended to serve the interests of a disabled person who can no longer make decisions regarding heath care and financial affairs. In advance of incapacity, one may designate an agent to make these decisions later on in the event of incapacity. Due to their broad application, Powers of Attorney are recommended over living wills. Forms are typically available in office supply stores. —Living Trusts - Living trusts are planning tools that aim to plan for incapacity by naming a designated agent or “trustee” to address one’s health care and financial decisions. There are tax advantages to a living trust that make it an attractive tool, especially for someone with substantial assets.

15. Comment la personne démente comprend elle le monde ? Slide 14 - How Is the Person with Dementia Understanding the World? We are influenced by how we see and understand the world around us. How we understand ourselves, other people, and the environment also influence how we are able to communicate with others. The person with AD often has difficulty understanding and interpreting events and actions. This can greatly influence the ability to communicate with others. Several factors can influence how a person with AD communicates with others, including problems within the person, other people, and the environment.Slide 14 - How Is the Person with Dementia Understanding the World? We are influenced by how we see and understand the world around us. How we understand ourselves, other people, and the environment also influence how we are able to communicate with others. The person with AD often has difficulty understanding and interpreting events and actions. This can greatly influence the ability to communicate with others. Several factors can influence how a person with AD communicates with others, including problems within the person, other people, and the environment.

16. Approches des autres Attentes irréalistes La communication est la clé de la relation - verbale - non verbale Slide 16 - The Approaches of Others—Unrealistic expectations - How you and other people approach and relate to the person with AD will influence interactions. If someone acts hurried or angry, the person with AD will notice, and it will cause a negative response. People with AD can often detect a mood or body language more quickly than they understand verbal communication. If you are acting rushed, the person with AD may sense this mood and become anxious. Communication is key: Verbal and non-verbal meansSlide 16 - The Approaches of Others—Unrealistic expectations - How you and other people approach and relate to the person with AD will influence interactions. If someone acts hurried or angry, the person with AD will notice, and it will cause a negative response. People with AD can often detect a mood or body language more quickly than they understand verbal communication. If you are acting rushed, the person with AD may sense this mood and become anxious. Communication is key: Verbal and non-verbal means

17. Au plan émotionnel Blessure narcissique (diminution de l’estime de soi) Peur Intolérance à la frustration Slide 17 - Emotional Stressors —Diminished self-esteem - The person with dementia is often in the position of wondering where exactly he or she is, who are these other people, what can he or she do to make things turn out? It seems that some of the anxiety seen in persons with dementia is the result of not knowing how to make things come together. It seems logical that if we don’t feel mastery or a sense of control over our immediate lives that it would contribute to diminished self-esteem. —Fear - Throughout the disease process, fear can be a strong element in the person'semotions. This fear can influence both communication and behaviors of the person with AD. A person might be afraid for many reasons: fear of not recognizing others, that nothing looks familiar, that something is awry, or that one can no longer communicate in a “normal” way. Others must constantly work to make the person with AD feel comfortable and safe. Use of hugs, hand holding, reassurance, and praise will help to calm the person and help to increase the ability to communicate. Diana Friel McGowin (1993) writes about fear based on her personal experience with AD: “One day I stood in front of the enormous mirrored closet doors that covered one entire wall of my bedroom. I studied my reflection closely. I looked perfect. I looked untouched. No one could tell just by looking at me that I wasn't perfect any more. Suddenly a spasm went through me. I clasped my hands tightly over my mouth to stifle the scream that was rising from my throat and trying to spill out into the quiet room” (p. 74). —Low frustration tolerance - The person with AD may respond with frustration or abruptness to a new situation or when there are competing stimuli. The individual may be having problems perceiving what is going on and integrating complex information. This confusion can result in an anxious and even angry reaction. The person may not feel in control and not know how to regain it without the help of others.Slide 17 - Emotional Stressors —Diminished self-esteem - The person with dementia is often in the position of wondering where exactly he or she is, who are these other people, what can he or she do to make things turn out? It seems that some of the anxiety seen in persons with dementia is the result of not knowing how to make things come together. It seems logical that if we don’t feel mastery or a sense of control over our immediate lives that it would contribute to diminished self-esteem. —Fear - Throughout the disease process, fear can be a strong element in the person'semotions. This fear can influence both communication and behaviors of the person with AD. A person might be afraid for many reasons: fear of not recognizing others, that nothing looks familiar, that something is awry, or that one can no longer communicate in a “normal” way. Others must constantly work to make the person with AD feel comfortable and safe. Use of hugs, hand holding, reassurance, and praise will help to calm the person and help to increase the ability to communicate. Diana Friel McGowin (1993) writes about fear based on her personal experience with AD: “One day I stood in front of the enormous mirrored closet doors that covered one entire wall of my bedroom. I studied my reflection closely. I looked perfect. I looked untouched. No one could tell just by looking at me that I wasn't perfect any more. Suddenly a spasm went through me. I clasped my hands tightly over my mouth to stifle the scream that was rising from my throat and trying to spill out into the quiet room” (p. 74). —Low frustration tolerance - The person with AD may respond with frustration or abruptness to a new situation or when there are competing stimuli. The individual may be having problems perceiving what is going on and integrating complex information. This confusion can result in an anxious and even angry reaction. The person may not feel in control and not know how to regain it without the help of others.

18. Avatars associés (non spécifiques) Médicaments, effets secondaires et toxicité Douleur Insomnie/fatigue Infections/maladies intercurrentes Déshydration et malnutrition Constipation Troubles visuels Troubles auditifs Slide 18 - Medical Stressors —Medications - Polypharmacy or taking many different medications can commonly be the cause of unplanned cognitive side effects. An important aspect of assessing the person with AD is to know what prescription and over-the-counter medications he or she is currently taking. Is he or she accurately following the medication regimen? What are the potential side-effects? —Pain - Pain can go unreported because of the person's inability to communicate exactly what he or she is feeling. Discomfort, headaches, tooth decay, or joint pain can greatly affect the ability to positively interact. It is good practice to ask about the presence of pain and give Tylenol or another analgesic if there is any sign of discomfort. Decreasing pain will help the person to be more successful during interactions. You and others need to be diligent about monitoring for signs of pain and treating it right away. —Insomnia/Fatigue - Sleep patterns of persons with AD can be highly irregular. Some people may sleep for periods of day and night. Others may sleep for short periods during the day and be awake for most of the night. The goal is to promote good sleep rituals to enable the person to sleep as normally as possible. A good balance of physical activity during daytime hours, including walking, exercise, and dancing will promote sleep throughout the night. It is also important to be exposed to adequate amounts of light during the day and then darkness at the time of sleep. Avoid encouraging persons to lay down and begin sleep early in the evening. If the sleep cycle starts later in the evening, there is less likelihood of wakefulness during the night. Sedatives for short-term use may be helpful, but these medications are often ineffective after a month or two. —Infections/Intercurrent Illness - If the person with AD is not feeling well from an infection or illness, interactions with others will be affected. The person could also be having difficulty with bowel and bladder, the flu, or a urinary tract infection. Also, falls, bumps, and bruises may occur yet go undetected since the person may not report an injury. Monitoring for infection or injury is a good idea, especially if there has been a sudden change in behavior. Keeping the person as healthy as possible will enhance well-being and improve interactions with others. —Dehydration and Malnutrition - For someone with AD, sufficient intake of fluids can be poor and dehydration may occur, especially during hot weather. The person with AD may be unaware of the sensation of thirst although he or she will drink liquids if reminded or offered. Also, meal preparation may become problematic and food intake might not be adequate. A person might forget to eat or be unable to locate food and liquid. Poor intake of food and liquid will influence bowel and bladder habits. Monitoring intake of food and fluids is essential for maintaining good health. —Constipation - If a person is constipated or if bowels become impacted, mood and behavior will be altered. Increased confusion, hallucinations, and delusions may occur. The person may feel and act uncomfortable without being able to state why. Bowel habits require close monitoring. —Poor Vision or Hearing - It is important to make sure that the person is wearing appropriate eyeglasses and hearing aids. If the person seems to have a hearing or visual deficit despite wearing glasses and/or hearing aids, a re-evaluation for updating of prescriptions may be indicated. Persons with sensory deficits can easily misinterpret words or actions and appear more confused than usual. Routine eye and ear exams are called for to evaluate and treat any deficits. Slide 18 - Medical Stressors —Medications - Polypharmacy or taking many different medications can commonly be the cause of unplanned cognitive side effects. An important aspect of assessing the person with AD is to know what prescription and over-the-counter medications he or she is currently taking. Is he or she accurately following the medication regimen? What are the potential side-effects? —Pain - Pain can go unreported because of the person's inability to communicate exactly what he or she is feeling. Discomfort, headaches, tooth decay, or joint pain can greatly affect the ability to positively interact. It is good practice to ask about the presence of pain and give Tylenol or another analgesic if there is any sign of discomfort. Decreasing pain will help the person to be more successful during interactions. You and others need to be diligent about monitoring for signs of pain and treating it right away. —Insomnia/Fatigue - Sleep patterns of persons with AD can be highly irregular. Some people may sleep for periods of day and night. Others may sleep for short periods during the day and be awake for most of the night. The goal is to promote good sleep rituals to enable the person to sleep as normally as possible. A good balance of physical activity during daytime hours, including walking, exercise, and dancing will promote sleep throughout the night. It is also important to be exposed to adequate amounts of light during the day and then darkness at the time of sleep. Avoid encouraging persons to lay down and begin sleep early in the evening. If the sleep cycle starts later in the evening, there is less likelihood of wakefulness during the night. Sedatives for short-term use may be helpful, but these medications are often ineffective after a month or two. —Infections/Intercurrent Illness - If the person with AD is not feeling well from an infection or illness, interactions with others will be affected. The person could also be having difficulty with bowel and bladder, the flu, or a urinary tract infection. Also, falls, bumps, and bruises may occur yet go undetected since the person may not report an injury. Monitoring for infection or injury is a good idea, especially if there has been a sudden change in behavior. Keeping the person as healthy as possible will enhance well-being and improve interactions with others. —Dehydration and Malnutrition - For someone with AD, sufficient intake of fluids can be poor and dehydration may occur, especially during hot weather. The person with AD may be unaware of the sensation of thirst although he or she will drink liquids if reminded or offered. Also, meal preparation may become problematic and food intake might not be adequate. A person might forget to eat or be unable to locate food and liquid. Poor intake of food and liquid will influence bowel and bladder habits. Monitoring intake of food and fluids is essential for maintaining good health. —Constipation - If a person is constipated or if bowels become impacted, mood and behavior will be altered. Increased confusion, hallucinations, and delusions may occur. The person may feel and act uncomfortable without being able to state why. Bowel habits require close monitoring. —Poor Vision or Hearing - It is important to make sure that the person is wearing appropriate eyeglasses and hearing aids. If the person seems to have a hearing or visual deficit despite wearing glasses and/or hearing aids, a re-evaluation for updating of prescriptions may be indicated. Persons with sensory deficits can easily misinterpret words or actions and appear more confused than usual. Routine eye and ear exams are called for to evaluate and treat any deficits.

19. Facteurs Environnementaux Trop ou pas assez de stimulation Dé personnification (“comment elle va aujourd’hui mamy ?”) Facilités ou obstacles physiques Familiarité, préjugés, stéréotypes… Slide 19 - Environmental Stressors —Stimulation - too much or too little—Physical design - helps and hindrances—Familiarity - cues and labels The physical environment can often influence how the person with AD is thinking, feeling, and interacting with others. Too much or too little stimulation can have profound effects on the well-being of someone with AD. For example, if a room is crowed or noisy, anxiety and agitation may arise from the overstimulating sights and sounds. If a room is too quiet or too dark, similar responses may be seen. Robinson and colleagues (1988) observed that, “As people become more cognitively impaired they encounter increasing problems with negotiating the environment.” People with AD need a supportive environment. They may get lost trying to find their way to the bathroom because all the doors in the hallway look the same. Some people may be able to read and understand signs, while others may have lost that ability. It may be necessary to provide the information in different ways.” It is important to know what type of environment works best for each person. Some people enjoy a high level of stimulation, while others need peace and quiet. Visual cues will be increasingly important to a person prone to disorientation. Signs and labels may help the person with AD to retain a sense of connection with his or her surroundings.Slide 19 - Environmental Stressors —Stimulation - too much or too little—Physical design - helps and hindrances—Familiarity - cues and labels The physical environment can often influence how the person with AD is thinking, feeling, and interacting with others. Too much or too little stimulation can have profound effects on the well-being of someone with AD. For example, if a room is crowed or noisy, anxiety and agitation may arise from the overstimulating sights and sounds. If a room is too quiet or too dark, similar responses may be seen. Robinson and colleagues (1988) observed that, “As people become more cognitively impaired they encounter increasing problems with negotiating the environment.” People with AD need a supportive environment. They may get lost trying to find their way to the bathroom because all the doors in the hallway look the same. Some people may be able to read and understand signs, while others may have lost that ability. It may be necessary to provide the information in different ways.” It is important to know what type of environment works best for each person. Some people enjoy a high level of stimulation, while others need peace and quiet. Visual cues will be increasingly important to a person prone to disorientation. Signs and labels may help the person with AD to retain a sense of connection with his or her surroundings.

20. Quand on s’adresse à un patient.. Organiser l’échange dans un moment et endroit calme, non sujet à distraction possible de l’attention Rester soi même attentif, établir le contact visuel, Porter attention aux mimiques et langage du corps Utiliser mots simples et concrets Se méfier des verbes d’action, souvent mal compris : plutôt montrer l’objet de l’action (gant de toilette) Slide 20 - Things To Think About When You Speak —Make the setting free of distractions - First, try to pick a setting that is free of environmental distractions. Background noise like music, a television, or loud conversations can inhibit the person with AD from focusing on what you are saying. Individuals with AD typically have difficulty sorting out competing stimuli, so decreasing distractions will facilitate communication. —Gain attention, make eye contact and consider body position - First, set the stage for good communication. Before starting a conversation, make sure that the person with AD knows you are in the room and that you can be easily seen and heard. Use your body posture and language in intentional ways. Establish and maintain eye contact. Establishing eye contact before beginning to speak will set the mood for the conversation and will help the person to focus on the conversation. Nonverbal communication becomes more important than spoken language as AD progresses. A person with AD receives cues from the tone of your voice and body language. If you appear stressed or hurried, the person with AD will pick up on these feelings and the essence of the conversation may be lost. —Provide orienting information - If you do not have a very close relationship with someone with AD, you probably need to re-introduce yourself at each encounter. A good introduction involves stating your name and the purpose of your encounter. This orienting information provides a context for and prepares the way for a successful interaction. It is also important to address the person by a preferred name or title. Whether to use just first name, both first and last name, or a surname will be an individual decision. If the person had a title used in earlier years (e.g., Doctor or Officer), it might be wise to use that official name. Simply ask the person about his or her preference. People with AD often respond to the mood of a situation more than actual spoken words. For example, if you use precise words but sound hurried or disinterested, your mood will be communicated rather than the intended message. Since it is very important to set a proper tone, you need to first convey calmness. It takes practice to sound relaxed when other things may be on your mind, but this is a necessary skill. It is also important to use humor. Smiling at and laughing with a person can set a relaxed tone. Humor that is abstract, such as sarcasm, should not be used since it may not be understood.Slide 20 - Things To Think About When You Speak —Make the setting free of distractions - First, try to pick a setting that is free of environmental distractions. Background noise like music, a television, or loud conversations can inhibit the person with AD from focusing on what you are saying. Individuals with AD typically have difficulty sorting out competing stimuli, so decreasing distractions will facilitate communication. —Gain attention, make eye contact and consider body position - First, set the stage for good communication. Before starting a conversation, make sure that the person with AD knows you are in the room and that you can be easily seen and heard. Use your body posture and language in intentional ways. Establish and maintain eye contact. Establishing eye contact before beginning to speak will set the mood for the conversation and will help the person to focus on the conversation. Nonverbal communication becomes more important than spoken language as AD progresses. A person with AD receives cues from the tone of your voice and body language. If you appear stressed or hurried, the person with AD will pick up on these feelings and the essence of the conversation may be lost. —Provide orienting information - If you do not have a very close relationship with someone with AD, you probably need to re-introduce yourself at each encounter. A good introduction involves stating your name and the purpose of your encounter. This orienting information provides a context for and prepares the way for a successful interaction. It is also important to address the person by a preferred name or title. Whether to use just first name, both first and last name, or a surname will be an individual decision. If the person had a title used in earlier years (e.g., Doctor or Officer), it might be wise to use that official name. Simply ask the person about his or her preference. People with AD often respond to the mood of a situation more than actual spoken words. For example, if you use precise words but sound hurried or disinterested, your mood will be communicated rather than the intended message. Since it is very important to set a proper tone, you need to first convey calmness. It takes practice to sound relaxed when other things may be on your mind, but this is a necessary skill. It is also important to use humor. Smiling at and laughing with a person can set a relaxed tone. Humor that is abstract, such as sarcasm, should not be used since it may not be understood.

21. CE QUI FONCTIONNE : Phrases courtes et simples (une seule idée) Utiliser mots familiers et concrets Éviter les questions ouvertes Aider à réduire les choix à faire Slide 21 - Language that Works - Techniques to Enhance Communication —Use short, simple sentences - We must also think carefully about the words and structure of the sentences used in conversation. A person with AD can easily get lost if you use long sentences. As few words as possible should be used to convey a thought. There is always the risk of outpacing the person’s ability to keep up with a conversation. Be aware of the speed of your speech. Avoid using abstract thoughts as the person often understands concrete thoughts better than something that must be interpreted. Use simple words that convey as much meaning as possible, and speak in short sentences. The challenge is to simplify your ideas without talking down to the person. —Break down tasks - If the person with AD appears to be having trouble completing a task, try breaking the task down into a few steps. Talking someone through the steps of a task is preferred over taking over the task completely. Feeling successful and semi-independent is clearly more desirable to the person with AD than feeling helpless or dependent on others. —Avoid open-ended questions and reduce choices - Questions that offer innumerable choices are often quite confusing to the person with AD. However, by narrowing the number of choices or possible responses to a question, the person with AD is more likely to be responsive. For example, instead of asking an open-ended question such as, “What would you like to do today?” it is best to offer a couple of specific options. Slide 21 - Language that Works - Techniques to Enhance Communication —Use short, simple sentences - We must also think carefully about the words and structure of the sentences used in conversation. A person with AD can easily get lost if you use long sentences. As few words as possible should be used to convey a thought. There is always the risk of outpacing the person’s ability to keep up with a conversation. Be aware of the speed of your speech. Avoid using abstract thoughts as the person often understands concrete thoughts better than something that must be interpreted. Use simple words that convey as much meaning as possible, and speak in short sentences. The challenge is to simplify your ideas without talking down to the person. —Break down tasks - If the person with AD appears to be having trouble completing a task, try breaking the task down into a few steps. Talking someone through the steps of a task is preferred over taking over the task completely. Feeling successful and semi-independent is clearly more desirable to the person with AD than feeling helpless or dependent on others. —Avoid open-ended questions and reduce choices - Questions that offer innumerable choices are often quite confusing to the person with AD. However, by narrowing the number of choices or possible responses to a question, the person with AD is more likely to be responsive. For example, instead of asking an open-ended question such as, “What would you like to do today?” it is best to offer a couple of specific options.

22. Ce qu’il faut éviter Tenter d’argumenter Donner des ordres stricts Être condescendant Poser des questions qui réclament des réponses complexes Parler des patients “comme s’ils n’étaient pas la” Dire “vous vous souvenez ?” s’il s’agit d’évènements récents… Tout ce qui occulte la dignité du patient Slide 24 - Things To Avoid —Don't argue - Arguing only makes a situation worse. Someone with AD no longer has the ability to be rational or logical to the same extent as in the past. Arguing is bound to lead to frustration for both parties. Do not allow yourself to get caught in an argument. —Don’t give strict orders - Few of us like to be bossed around, and the person with AD is no exception. Gentle persuasion and limiting choices are much better ways of getting something done. State directions positively. Instead of saying "You can't go outside now," try an alternative such as, "Let's sit down here, I really could use your help right now." —Don’t be condescending - It is a challenge to speaking slowly and in short sentences without using a condescending tone of voice. Also, an adult tone of voice and respectful words are needed. There is the risk of triggering anger if the person with AD feels that he or she is being treated like a child. —Don’t ask questions requiring detailed responses - Answers to direct questions often require a good memory. Someone with AD may feel embarrassed or humiliated if asked questions that cannot be answered correctly. Try rephrasing questions to be more concrete and specific. For example, instead of saying "Who are the people in this photo?" say, "This must be your family." This approach allows the person to reply gracefully and without undue pressure. —Don't talk about people in from of them - It is easy to fall into the habit of talking about people in front of them when they can no longer communicate well. It is difficult to know how much someone with AD understands, so it is best to assume that everything can be understood. —Don’t bother asking, “Do you remember?” - Although it certainly is useful to tap into the preserved, long-term memory of someone with AD through reminiscence, it is not worthwhile to ask questions about recent events that cannot be recalled. What is the point of testing a person’s faulty recent memory?Slide 24 - Things To Avoid —Don't argue - Arguing only makes a situation worse. Someone with AD no longer has the ability to be rational or logical to the same extent as in the past. Arguing is bound to lead to frustration for both parties. Do not allow yourself to get caught in an argument. —Don’t give strict orders - Few of us like to be bossed around, and the person with AD is no exception. Gentle persuasion and limiting choices are much better ways of getting something done. State directions positively. Instead of saying "You can't go outside now," try an alternative such as, "Let's sit down here, I really could use your help right now." —Don’t be condescending - It is a challenge to speaking slowly and in short sentences without using a condescending tone of voice. Also, an adult tone of voice and respectful words are needed. There is the risk of triggering anger if the person with AD feels that he or she is being treated like a child. —Don’t ask questions requiring detailed responses - Answers to direct questions often require a good memory. Someone with AD may feel embarrassed or humiliated if asked questions that cannot be answered correctly. Try rephrasing questions to be more concrete and specific. For example, instead of saying "Who are the people in this photo?" say, "This must be your family." This approach allows the person to reply gracefully and without undue pressure. —Don't talk about people in from of them - It is easy to fall into the habit of talking about people in front of them when they can no longer communicate well. It is difficult to know how much someone with AD understands, so it is best to assume that everything can be understood. —Don’t bother asking, “Do you remember?” - Although it certainly is useful to tap into the preserved, long-term memory of someone with AD through reminiscence, it is not worthwhile to ask questions about recent events that cannot be recalled. What is the point of testing a person’s faulty recent memory?

23. Slide 24 - Things To Avoid —Don't argue - Arguing only makes a situation worse. Someone with AD no longer has the ability to be rational or logical to the same extent as in the past. Arguing is bound to lead to frustration for both parties. Do not allow yourself to get caught in an argument. —Don’t give strict orders - Few of us like to be bossed around, and the person with AD is no exception. Gentle persuasion and limiting choices are much better ways of getting something done. State directions positively. Instead of saying "You can't go outside now," try an alternative such as, "Let's sit down here, I really could use your help right now." —Don’t be condescending - It is a challenge to speaking slowly and in short sentences without using a condescending tone of voice. Also, an adult tone of voice and respectful words are needed. There is the risk of triggering anger if the person with AD feels that he or she is being treated like a child. —Don’t ask questions requiring detailed responses - Answers to direct questions often require a good memory. Someone with AD may feel embarrassed or humiliated if asked questions that cannot be answered correctly. Try rephrasing questions to be more concrete and specific. For example, instead of saying "Who are the people in this photo?" say, "This must be your family." This approach allows the person to reply gracefully and without undue pressure. —Don't talk about people in from of them - It is easy to fall into the habit of talking about people in front of them when they can no longer communicate well. It is difficult to know how much someone with AD understands, so it is best to assume that everything can be understood. —Don’t bother asking, “Do you remember?” - Although it certainly is useful to tap into the preserved, long-term memory of someone with AD through reminiscence, it is not worthwhile to ask questions about recent events that cannot be recalled. What is the point of testing a person’s faulty recent memory?Slide 24 - Things To Avoid —Don't argue - Arguing only makes a situation worse. Someone with AD no longer has the ability to be rational or logical to the same extent as in the past. Arguing is bound to lead to frustration for both parties. Do not allow yourself to get caught in an argument. —Don’t give strict orders - Few of us like to be bossed around, and the person with AD is no exception. Gentle persuasion and limiting choices are much better ways of getting something done. State directions positively. Instead of saying "You can't go outside now," try an alternative such as, "Let's sit down here, I really could use your help right now." —Don’t be condescending - It is a challenge to speaking slowly and in short sentences without using a condescending tone of voice. Also, an adult tone of voice and respectful words are needed. There is the risk of triggering anger if the person with AD feels that he or she is being treated like a child. —Don’t ask questions requiring detailed responses - Answers to direct questions often require a good memory. Someone with AD may feel embarrassed or humiliated if asked questions that cannot be answered correctly. Try rephrasing questions to be more concrete and specific. For example, instead of saying "Who are the people in this photo?" say, "This must be your family." This approach allows the person to reply gracefully and without undue pressure. —Don't talk about people in from of them - It is easy to fall into the habit of talking about people in front of them when they can no longer communicate well. It is difficult to know how much someone with AD understands, so it is best to assume that everything can be understood. —Don’t bother asking, “Do you remember?” - Although it certainly is useful to tap into the preserved, long-term memory of someone with AD through reminiscence, it is not worthwhile to ask questions about recent events that cannot be recalled. What is the point of testing a person’s faulty recent memory?