Caregiving in Dementia
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This document provides an overview of a training on caregiving for dementia held in Ahmedabad, India. The training covered defining dementia and Alzheimer's disease, basic values in dementia care, communicating with those who have dementia, dealing with behaviors, activities of daily living, and activities. It discussed what dementia is, common causes, the progression of the disease, and challenges of caregiving. It also presented an Alzheimer's bill of rights and rules for interacting with those who have dementia with a person-centered approach.
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Caregiving in Dementia
- 1. Varishta Awareness & Support for Dementia in the Elderly An initiative by Silversmile Eldercare Foundation www.varishta.org care@varishta.org
- 2. Daksha Bhat Other certifications Care of Elders with Alzheimer’s Disease and other Major Neurocognitive Disorders Growing Old Around The Globe Healthcare Innovation and Entrepreneurship Training and Learning Programs for Volunteer Community Health Workers Understanding Dementia Understanding Memory: Explaining the Psychology of Memory through Movies What is Palliative Care? Developing Innovative Ideas for New Companies Leading Strategic Innovation in Organisations New Models of Business in Society Founder of Silversmile Eldercare Foundation Her vision is to create a Dementia Awareness and Care Centre model that can be replicated across the state and the country. She has an MBA from MS University She has worked in corporates handling end to end projects. Driving innovation, process improvement and quality outcomes are her strengths. Her last position was Director Systems Research and IT, Tam Media Research Pvt Ltd. 2
- 3. Caregiving for Dementia MODULE FOR LIFELINE CAREGIVER TRAINING ON: 19TH APRIL 2019. AT: AHMEDABAD MANAGEMENT ASSOCIATION.
- 4. Purpose Improve Quality of Life for those under our care with Alzheimer’s disease and other forms of dementia & Reduce caregiver stress and increase job satisfaction for both professional and volunteer caregivers. This training is focused on local context and was conducted in Gujarati 4
- 5. What we will cover I. Defining Dementia and Alzheimer's Disease II. Values in Dementia Care III. Communicating with the Person with Dementia IV. Dealing with Behaviors V. Activities of Daily Living VI. Activities An Overview of the Following Areas 5
- 6. SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE UNDERSTAND DEMENTIA. UNDERSTAND HOW THE DISEASES CHANGE MEMORY, BEHAVIOR AND ABILITY TO CARE FOR ONESELF.
- 7. What is dementia? 7 SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE
- 8. See this Video (in Gujarati) https://www.youtube.com/watch?v=b5NnLF4rSUg A brief introductory description of dementia and Alzheimer's disease in Gujarati 8 SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE
- 9. Dementia is a term that describes a collection of symptoms and conditions that that develop when nerve cells in the brain (called neurons) die or no longer function normally. It is not one specific disease. Memory loss. Inability to do daily tasks. Difficulties with problem solving. Unable to plan. Inappropriate behavior 9 SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE
- 10. Dementia is a syndrome The underlying cause may vary. 2/3 of dementia is caused by Alzheimer’s disease Vascular dementia is the next leading cause. 10 SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE
- 11. Other Common Causes Vascular Dementia This is the second most common cause of dementia. It is caused by poor blood flow to the brain resulting in cell damage. Vascular dementia often begins abruptly and may be due to diabetes, hypertension or a stroke. In vascular dementia memory of events is affected but recognition of people is not. Memory loss, hallucinations, agitation, and withdrawal may occur. Dementia with Lewy Bodies Abnormal protein deposits called Lewy bodies in the nerve cells in the brain stem cause this form of dementia. The brain's normal functioning is impaired, causing tremors, violent gesticulation during sleep, slow or shaky movements, balancing trouble, and a shuffling walk. Parkinson's Disease Dementia In its advanced stage Parkinson's disease may affect cognitive functioning. In addition to Parkinson’s symptoms such as tremors, muscle stiffness and speech problems, the person’s reasoning, memory, and judgment also get affected. Frontotemporal Dementia Some disorders affect the frontal lobes of the brain. They cause impaired judgment, changes in personality, mood swings, problems with language and a decline in social skills. Symptoms can occur suddenly. Memory loss and speech problems occur in the later stages. 11 SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE
- 12. NucleusSynapses Dendrites Collect Electrical Signals Cell Body Integrates signals and generated outgoing signal Axon Passes signals on The Neurons 12 The Pathology of Alzheimer’s PLAQUES TANGLES SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE
- 13. Bad Connections 13 SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE
- 14. The Progression of Dementia Memory loss Unable to manage finances Unable to Plan Forgets current time or location Unable to find the right words to explain what they want Personality change Apathy/ Aggression Disinhibition Problems walking Problems talking Unable to swallow Careless about hygiene / dressing Unable to bathe dress without help Fully dependent Other complications Pneumonia, Bedsores UTI Cannot express pain Bathing Feeding Nursing Required Confused or forgetful Needs support for some activities Needs help for all activities Totally dependent on others 14 SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE
- 15. See this video (In Gujarati) https://www.youtube.com/watch?v=04av9X8eOjc&t=66s Stages of Alzheimer's disease-અલ્ઝાઈમરના રોગના તબક્કા 15 SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE
- 16. Depression Agitation ApathyPsychosis Sleep Not socialising. Not taking care of own interests Crying, not communicating Walking up and down Shouting or repeating sentences Suspicion that someone has stolen something. Jealousy about a spouse Odd sleeping hours. Not sleeping at night Frequent waking up Nearly all persons with dementia will experience NPS NEURO PSYCHIATRIC SYMPTOMS & THEIR EFFECT (BEHAVIOURAL SYMPTOMS) 16 SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE
- 17. Behaviors Can include agitation, psychosis, sundowning, and hypersexuality. They are a response to discomfort, an unmet need, and increasing confusion. They also reflect an increase in difficulty with communication, progressive loss of independence, and poor insight and judgment. Behaviors may be psychomotor (pacing, wandering, repeated crying out, etc.), verbal (belligerence, nastiness towards others, repetitiveness) and/or physical (combativeness, often associated with personal care; inappropriate touching). Persons may be very volatile or explosive in nature 17
- 18. Emotional or Mood Disturbances Depression: may reflect as irritability, fearfulness, or tearfulness, hopelessness, somatic complaints (i.e. feeling ill physically), lack of energy and/or interest, change in appetite. Anxiety: includes feelings of nervousness, worry and apprehension. This is more common in early dementia when the persons with dementia are aware of their deficits. Apathy: a flatness of mood that can occur in later stages. It represents the inability to interact within one’s environment on one’s own. 18
- 19. Sleep Disturbance This is one of the most disturbing behaviors for caregivers often leading to exhaustion and despair. PWD may have trouble falling or asleep, or may wake up and not go back to sleep. They may wander, Or mix up night and day, Sometimes at night they may appear more confused; and/or may have exacerbation of anxiety, physical or verbal outbursts 19 SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE
- 20. SECTION I – DEFINING DEMENTIA AND ALZHEIMER’S DISEASE Challenges of Caregiving 20 Thankless Stigma Finances Lack of respite No Guidance Criticism Other Responsibilities Changing Behaviours
- 21. SECTION II – BASIC VALUES OF DEMENTIA CARE AN OVERVIEW OF THE PHILOSOPHY AND VALUES OF GOOD DEMENTIA CARE
- 22. An Alzheimer’s Disease Bill of Rights To be informed of one’s diagnosis. To have appropriate, ongoing medical care. To be treated as an adult, listened to, and afforded respect for one’s feelings and point of view. To be with individuals who know one’s life story, including cultural and spiritual traditions. To experience meaningful engagement throughout the day. To live in a safe and stimulating environment. To be outdoors on a regular basis. To be free from psychotropic medications whenever possible. To have welcomed physical contact, including hugging, caressing, and handholding. To be an advocate for oneself and others. To be part of a local, global, or online community. To have care partners well trained in dementia care. http://bestfriendsapproach.com/ 22 SECTION I I– BASIC VALUES OF DEMENTIA CARE
- 23. Rules of the Dementia World 1. Be “present” in the moment; be fully attentive This way, you satisfy the need sooner and won’t have to repeat the process as often. 2. Recognize the uniqueness of each person Know something about each personality – each life. 3. Draw out each person’s remaining abilities Help to encourage and maximize them. 4. Communicate on a feeling level Validate their feelings and we validate them. Feelings are real even if events are not. 5. Assume words & actions have meaning. Not as “problems” Accept and try to find hidden meanings. 6. Nourish attachments between people with dementia and others We all need to socially bond in order to feel our personhood. 7. Promote interdependence Do only what they can’t do on their own and no more. The decline of dementia is like the reversal of childhood. Both need nurturing and encouragement. 23 SECTION I I– BASIC VALUES OF DEMENTIA CARE
- 24. Person Centered Care 24 SECTION I I– BASIC VALUES OF DEMENTIA CARE
- 25. SECTION III - COMMUNICATING WITH THE PERSON WITH DEMENTIA PRACTICAL APPLICATIONS USING THE “SOFT APPROACH” AND REDIRECTING TO CREATE POSITIVE INTERACTION. 25
- 26. Communicating PersonP EmpathyE RespectR SincerityS OpennessO Non-judgemental attitudeN 26 SECTION III - COMMUNICATING WITH THE PERSON WITH DEMENTIA
- 27. Basic communication Introduce yourself by name/association. Validate responses and feelings verbally. Use short simple sentences. Ask primarily yes/no questions. Allow sufficient time for response. Use word cues - try to gently guess what the person wants. Tactfully redirect the person for a better interaction. 27 SECTION III - COMMUNICATING WITH THE PERSON WITH DEMENTIA
- 28. Step into their world DO NOT challenge Stepping into their reality is NOT lying or deceitful; they are no longer capable of stepping into your reality. Addressing fears and frustrations of the person is a helpful response to their story and helps provide them comfort and security. Validating the story or asking questions to elicit more memories and interaction is a positive communication technique. 28 SECTION III - COMMUNICATING WITH THE PERSON WITH DEMENTIA
- 29. Plan for Better Communication Verbal Redirect Validate Keep it simple Get attention first Modulate voice Do not address as a child !!! Non Verbal Approach from the front Stay on the same eye level Reduce other distractions Nod or shake head Smile Use friendly body language Learn their likes and dislikes and their moods, listen sincerely. 29 SECTION III - COMMUNICATING WITH THE PERSON WITH DEMENTIA
- 30. Remember your goal The goal is to avoid ANY situations likely to create anxiety or conflict. Both cause distress in the PWD. WATCH and understand how the person responds to the non-verbal messages you are sending. 30 SECTION III - COMMUNICATING WITH THE PERSON WITH DEMENTIA
- 31. SECTION IV - DEALING WITH DEMENTIA RELATED BEHAVIORS AN OVERVIEW OF ASSESSING, PREVENTING AND DEALING WITH DIFFICULT SITUATIONS
- 32. See this video (In Gujarati) https://www.youtube.com/watch?v=qVaYvDbbtSM Managing Behaviours in Dementia - ડિમેન્શિયામાાં વતતણુકનુાં નનયમન 32 SECTION IV - DEALING WITH DEMENTIA RELATED BEHAVIORS
- 33. COMMON BEHAVIORS Resisting/fighting hands-on caregivers Assaultive toward peers Wandering and rummaging Physical restlessness “Sundowning” Eating problems Sleep disturbances Disruptive yelling or moaning Problematic sexual behavior Disrobing 33 SECTION IV - DEALING WITH DEMENTIA RELATED BEHAVIORS
- 34. Why Behaviours Occur Changes in the Brain Confusion A Response to Caregiving Pain Acute Medical Problems; Delirium Environmental Stressors 34 SECTION IV - DEALING WITH DEMENTIA RELATED BEHAVIORS
- 35. SECTION V - ACTIVITIES OF DAILY LIVING (ADLS) FUNDAMENTAL, SELF-CARE TASKS SECTION V - ACTIVITIES OF DAILY LIVING
- 36. Effects of Dementia on ADLs Memory loss Impaired judgement Disorientation Communication problems Agitation / Restlessness Difficulty with sequencing Unsteady gait / falls Inability to use utensils 36 SECTION V - ACTIVITIES OF DAILY LIVING
- 37. SECTION VI - ACTIVITIES EVERY EVENT, ENCOUNTER OR EXCHANGE IS AN ACTIVITY
- 38. Types of Activities Personal care Mealtime Chores Physical exercise Social Spiritual Intellectual Creative Work Spontaneous Games Hobbies 38 SECTION VI - ACTIVITIES
- 39. Benefits of Activities Structures time Reduces undesirable behavior Enhances quality of life Provides intellectual stimulation Maintains independence and physical well-being Encourages socialization Helps person feel useful Alleviates family concerns about the person “not doing enough” 39 SECTION VI - ACTIVITIES
- 40. We will remember for them! Because Memories Matter 40
- 41. DATA 41
- 42. 42What is the status of our population? 2001 Census -, 7.5% of the population older than 60 years. Source: Census of India 2001 Population projections for India and States 2001-2026
- 43. 43Demographic ageing & dementia. In 2010, there 37 lakh Indians, aged over 60 years, had dementia and the total societal costs were estimated to be 14,700 crore While the numbers are expected to double by 2030, (to 74 lakh) costs would increase three times 0 20 40 60 80 100 120 140 160 2000 2005 2010 2015 2020 2025 2030 2035 2040 2045 2050People(lakhs)
- 44. Neurological Disease Early age education Social Engagement Mental Activity Physical Activity Inheriting good gene combinations. Vascular Health – (BP) poor oxygen supply damages the nerve cells Head Injury Genetic Factors like Apolipoprotein E Depression Age Factorsthatincreaserisk Factorsthatdecreaserisk 44
- 45. Sources for further information www.varishta.org www.dementianotes.in www.alz.org 45 ગુજરાતીમાાં માહિતી પૂરી પાડનાર એકજ વેબસાાટ . Contact us at care@varishta.org
Editor's Notes
- The purpose of this section: introduce the person with dementia set a context for caring for those who have diseases of the brain that forever change a person's memory behavior and ability to care for oneself.
- Give examples for each one Decision khota leva. Calculation karva, taran karvu,
- Neuron netwroks are flexible they adapt to change If the cell body was the size of a tennis ball the axon would be 10 kms long and as thick as a garden hose. This tennis ball collects decisions
- Patients may face memory loss, which increases as their dementia progresses. They may find it difficult to balance their bank statements or plan for visitors at home. Sometimes, they forget where they are (which house, which city) or the date and time. They may struggle to find the right words to explain what they want. They may show major personality changes, apathy, and socially inappropriate behaviour. Over time, they become unable to do the normal activities we all take for granted, and could have problems walking, talking, and swallowing food. In the final stage, they become fully dependent and are prone to serious complications such as pneumonia, infection, bedsores, multi-organ failure, and so on. To people around them–their family, friends, colleagues, neighbours–dementia patients look confused and forgetful and/ or start behaving strangely, such as withdrawing or getting aggressive or showing disinhibition. Many of these symptoms are often assumed to be part of normal ageing; but dementia is not normal ageing. Sometimes, especially when the patients are younger and show behavior changes (but don’t have memory loss), the symptoms may be mistaken as a psychiatric problem or even ignored as “stubbornness” or “bad character”.
- The behaviours keep changing so new ways of dealing with them have to be thought of all the time.
- This applies to coworkers and clients too.