The role of the caregiver Presented by Alba Bonetti Neurology training for non-neurologists in West Africa: Focus on Parkinson s Disease and other Neurodegenerative Disorders GHANA SEPTEMBER 15-18 2013
Life expectancy increase % Life expectancy at birth : 1990-2011 % Euro area 7% Sub-Saharan Africa 10% World 8% Italy 6% Ghana 12% 0% 2% 4% 6% 8% 10% 12% 14% World Data Bank - Genders Stastistics
HEALTH CONDITIONS Current Health Issues Maternal/Child Health Malaria HIV/AIDS Tuberculosis Plus Cardiovascular Disease Diabetes Cancer Neurodegenerative Conditions
DISABILITY BURDEN Severe Parkinson s disease and Severe Dementia among the most costly conditions Common values in assessing health outcomes from disease and injury: disability weights measurement study for the Global Burden of Disease Study 2010. The Lancet, December 2012
Schizophrenia: acute state Spinal cord lesion at neck: untreated Major depressive disorder: severe episode Traumatic brain injury: long-term consequences, severe,with or without treatment Schizophrenia: residual state Stroke: long-term consequences, severe plus cognition problems Parkinson s disease: severe AIDS: not receiving antiretroviral treatment Anxiety disorders: severe Terminal phase: with medication (for cancers, end-stage kidney or liver disease) Rectovaginal fistula Bipolar disorder: manic episode Spinal cord lesion below neck: untreated Burns of 20% total surface area or 10% total surface area if head or neck, or hands or wrist Motor plus cognitive impairments: severe Epilepsy: untreated Tuberculosis: with HIV infection Fracture of pelvis: short term Fracture of neck of femur: long term, without treatment Motor impairment: severe Low back pain: chronic, with leg pain Spinal cord lesion at neck: treated Amputation of both arms: long term, without treatment Severe chest injury: short term, with or without treatment Vesicovaginal fistula Tuberculosis: without HIV infection Abdominopelvic problem: severe Low back pain: acute, with leg pain Stroke: long-term consequences, moderate plus cognition problems Cancer: diagnosis and primary therapy Musculoskeletal problems: generalised, moderate Neck pain: chronic, severe Low back pain: acute, without leg pain Alcohol use disorder: mild Infectious disease: post-acute consequences (fatigue, emotional lability, insomnia) Severe traumatic brain injury: short term, with or without treatment Traumatic brain injury: long-term consequences, moderate, with or without treatment Bulimia nervosa Neck pain: acute, severe Infectious disease: acute episode, severe Iodine-deficiency goitre Distance vision blindness Fracture of pelvis: long term Fracture other than neck of femur: short term, with or without treatment Disfigurement: level 2, with itch or pain Fetal alcohol syndrome: severe Musculoskeletal problems: legs, severe Angina pectoris: severe Anaemia: severe Intellectual disability: profound Anxiety disorders: moderate Crush injury: short or long term, with or without treatment Injured nerves: long term Fracture of vertebral column: short or long term, with or without treatment Dislocation of knee: long term, with or without treatment Severe wasting Abdominopelvic problem: moderate Lymphatic filariasis: symptomatic Traumatic brain injury: long-term consequences, minor, with or without treatment Neck pain: chronic, mild Epididymo-orchitis Hearing loss: complete, with ringing Fracture of patella, tibia or fibula, or ankle: short term,with or without treatment Dementia: mild Dislocation of shoulder: long term, with or without treatment Injury to eyes: short term Motor impairment: moderate Epilepsy: treated, seizure free Severe toothloss Heart failure: moderate Fracture of patella, tibia or fibula, or ankle: long term, with or without treatment Hearing loss: severe, with ringing Injured nerves: short term Herpes zoster Anaemia: moderate Acute myocardial infarction: days 3-28 Kwashiorkor Speech problems Infectious disease: acute episode, moderate Fracture of clavicle, scapula, or humerus: short or long term, with or without treatment Amputation of both legs: long term, with treatment Attention-deficit hyperactivity disorder Amputation of both arms: long term, with treatment Neck pain: acute, mild Hearing loss: mild, with ringing Heart failure: mild Hearing loss: complete Fracture of foot bones: short term, with or without treatment Hearing loss: severe Hearing loss: profound Intestinal nematode infections: symptomatic Amputation of finger(s), excluding thumb: long term, with treatment End-stage renal disease: with kidney transplant Fracture of hand: short term, with or without treatment Diabetic foot Musculoskeletal problems: legs, mild Amputation of one leg: long term, with treatment Ear pain Fetal alcohol syndrome: mild Claudication COPD and other chronic respiratory diseases: mild Amputation of thumb: long term Abdominopelvic problem: mild Motor impairment: mild Parkinson s disease: mild Other injuries of muscle and tendon (includes sprains, strains, and dislocations other than shoulder, Periodontitis Infectious disease: acute episode, mild Open wound: short term, with or without treatment Distance vision: mild impairment 0,8 0,7 0,6 0,5 0,4 0,3 0,2 0,1 0
WHAT DO CAREGIVERS NEED Be Informed Be Involved Be Empowered Be Supported Preserve their own health
Informed-Empowered Match the level of information with the family and social context
GIVE THE CAREGIVER THE RIGHT TOOLS
Informed - Empowered Parkinson s is not contagious It s related to aging but not always It cannot be cured Symptoms tend to worsen but they can be controlled though medication Patients may experience on off effects from medication
Dealing with motor symptoms The aims are to preserve independency to prevent falls and injuries Help the person with walking and turning standing keep the right posture do not push or pull him/her
Dealing with motor symptoms Help the person adopting the right strategies for Arising from a chair Turning in bed Getting in/out chair, bed, car Exercise regularly
Walk with him/her
Remind him to: Rise his/her legs when walking Place his heel first and then his toes Take long steps Take large turns
Prevent falls
Remind him /her to keep a correct posture Help him to exercise regularly to maintain his her flexibility
When to teach movement strategies The sooner the better! At an early stage of the disease With preserved learning abilities
Caring for Physically Dependent Person Feeding Personal hygiene Incontinence Prevention of pressure wounds Transfers
Caring for the dependent elderly
Caring for the dependent elderly
Caring for Patients with Dementia Forgetfulness/Confusion Agitation/Wandering Aggressive behaviour Repetition Suspicion Sleep disorders
Respond to emotion not to behaviour
How? Remain Calm Flexible Don t argue, do not try to convince Do not attempt to use reason or logic Avoid arguing Look for reasons behind behaviour Explore pain and discomfort
How? Keep the person engaged Provide a routine Focus on abilities Smile! Show respect
Communication Use Listening skills Attract her/his attention Use body language Speak clearly Use Physical contact
Non verbal communication Your mood will be mirrored Approach from the front Establish eye contact Speak at eye level Use gentle touch Point or demonstrate
Caregivers: The Hidden Patient Caregivers often experience stress, fatigue, and burnout 49% of females and 31% of males experience depression as a result of caregiving Elderly spousal caregivers have a 63% higher risk of dying than non-caregivers
Encourage them to Practice good health habits Ask others to help; encourage self-care by the patient. Share their problems Try to take regular breaks from caring Maintain their faith Learn how to laugh humour helps to keep a positive attitude Keep social contacts
Thank you for your attention
http://youtube.com/watch?v=pyxprpxxwju http://download.cnet.com/3055-2071_4-75219434.html?&tag=pdl-redir