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Description : Check out this medical presentation on Neurology, which is titled "Understanding Parkinson’s: a guide for care staff", to understand Parkinson’s Disease.

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Slide 1-

Understanding Parkinson’s: a guide for care staff Claire Holt : Education & Training Officer
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Aims of the seminar To increase your knowledge and understanding of Parkinson’s. To better understand the needs of people living with and caring for people with Parkinson’s. To identify challenges associated with the symptoms of Parkinson’s, the side effects of the medication, and to dispel any myths surrounding Parkinson’s. To learn about the resources available to improve the quality of life of people with Parkinson’s and their carers.
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Programme Parkinson’s Disease – an overview Break DVD Parkinson’s UK Addressing the Challenges of Caring - Case Studies Summary and Evaluation Close
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Parkinson’s: overview Progressive Fluctuates Neurological – loss of dopamine in the brain Currently no cure Not contagious Rarely directly inherited Everyone is different
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Essay on the Shaking Palsy “….involuntary tremulous motion, with lessened muscular power, in parts not in action …… with a propensity to bend the trunk forward, and to pass from a walking to a running pace …… the senses and intellect being uninjured.” Dr James Parkinson, London 1817
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Essay on the Shaking Palsy “….involuntary tremulous motion, with lessened muscular power, in parts not in action … with a propensity to bend the trunk forward, and to pass from a walking to a running pace… the senses and intellect being uninjured.” Dr James Parkinson, London 1817
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One in 500 of general population (One in 50 is over 80s) 127,000+ cases in UK* (2020: 28% increase expected) Most diagnosed between the ages of 55-74 Occurs in all ethnic groups Statistically slightly more men than women Men: 55% Women: 45% 1 in 20 diagnosed are under 40 Parkinson’s: prevalence and incidence * General Practice Research Database (GPRD) 2009
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Motor symptoms of Parkinson’s Freezing Postural instability Bradykinesia Rigidity Tremor Motor symptoms of Parkinson's Speech Arising from a chair Posture Reduced arm swing Hypomimia Shuffling gait Gait festination Turning Turning in bed Micrographia Falls
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Neuropsychiatric Dementia Depression Apathy Anxiety Loss of libido Constipation Urinary incontinence Erectile dysfunction Excessive sweating Postural hypotension Excessive salivation Non-motor symptoms of Parkinson's Autonomic Sleep disturbance Sensory symptoms REM sleep disorder RLS Vivid dreams Daytime somnolence Dystonia Pain Paresthesia
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Non-motor symptoms Questionnaire
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NICE Guidelines If PD is suspected, a patient should quickly be referred – untreated – to a neurologist or to a geriatrician with a special interest in Parkinson’s Referral time should be no more than 6 weeks and should not exceed 2 weeks in cases where the condition is severe or complex
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Control Patient with PD
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Control Patient with Parkinson’s
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Parkinsonism Classic - idiopathic Parkinson’s (around 85% of cases) Atypical - Parkinson’s plus syndromes Multiple-System Atrophy (MSA) Progressive Supranuclear Palsy (PSP) Other Causes – Drug-induced Parkinson’s – neuroleptic drugs/anti-emetics Post Encephalitic Parkinson’s Trauma Toxins Vascular parkinsonism
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DRUG INDUCED PARKINSON’S STOP All medications that cause Parkinson’s Metoclopramide Maxolon Prochlorperazine Flunarizine Cinnarizine Sodium Valproate NB. Domperidone is an acceptable alternative for managing nausea
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Diagnosis of Parkinson’s: signs and symptoms Slowness of movement (bradykinesia) Poverty of movement (hypokinesia) Difficulty starting a movement (initiation) Reduced size of movements (amplitude) Lack of co-ordination of movements (sequencing) Stiffness (rigidity) Tremor (rest)
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Other features Speech problems Constipation Difficulties with balance Pain Lack of facial expression Incontinence Altered posture Dementia Swallowing problems Depression Handwriting problems Excessive tiredness Motor freezing Sleep disorders Impact of non-motor symptoms often neglected Importance of referral to a consultant
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Affecting a person’s “Learned Voluntary Actions” The Impact of Parkinson’s - Slowness of Movement
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Many everyday activities are affected The impact of Parkinson’s Motor symptoms Slowness and poverty of movement/rigidity/tremor Non-motor symptoms
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Cooking Climbing stairs Going to the toilet Cleaning teeth Playing sport Writing Socialising Answering the phone Walking Washing Household chores Driving Dancing Enjoying hobbies Rising from a chair Getting out of bed Eating Talking Dressing Shopping Gardening Working Having Sex Turning over in bed The impact of Parkinson’s Everyday activities that can be affected
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Swallowing From European Survey 84% of people with PD had swallowing problems 44% had lost weight in previous 12 months 60% ate less than normal 49% felt eating was not enjoyable 68% were embarrassed eating 70% were unaware this was treatable
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The Impact of Parkinson’s Eating & swallowing difficulties Drooling & Excessive sweating Drop in blood pressure Anxiety & Depression Dementia Sexual dysfunction Phychosis/hallucinations Smell/taste dysfunction Everyone is Different Constipation Incontinence Handwriting Other fine movements Pain Turning over in bed Tiredness/sleep disorders Tremor Falls “Freezing”
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15 Minute Break
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Impact of Parkinson’s
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The impact of Parkinson’s Communication difficulties How do we usually communicate effectively? Tone/gesture Body language 7% 38% Words Mehrabian, A Silent messages: implicit communication of emotions and attitudes (1981) 55%
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Jean and I are laughing at the same joke … … but I have Parkinson’s. “I am trying to smile but the rigid muscles that are a symptom of my Parkinson’s often make it difficult. I am not being rude. I am not being miserable. I have Parkinson’s.” Terry Kavanagh
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Communication Tips Please GIVE PLENTY OF TIME Please try not to appear rushed or angry Find Quiet area / avoid large groups Look the person in the eye, Eye contact is very important Suggest words…but try not to interrupt Don’t talk about / in front of them Use adult language
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……relationships, mobility, deterioration, slowness, withdrawal from activities, communication problems, motor fluctuations, involuntary movements, confusion, depression, anxiety, hallucinations, memory changes, constipation, incontinence, weight loss, hypotension,swallowing problems, pain, loss of dignity, loss of choice, isolation…… The Impact of Parkinson’s - Parkinson’s affects….
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Managing Parkinson’s
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Managing Parkinson’s Medication Surgery (Deep brain stimulation, Lesioning & Stem cell transplants) Multidisciplinary Team Physiotherapy Speech & Language Therapy Occupational Therapy Pharmacist, Dietitian, Social worker
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Physiotherapist Early intervention Maximise functional ability and minimise secondary complications6 Assessment & treatment programmes for: Gait Balance Posture Education and support for patient and carer Pain management Falls prevention Teach compensatory strategies and cueing techniques Ultrasound for Apomorphine nodules
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Occupational Therapist Involved if there is difficulty with activities of daily living Maintenance of independence, safety and interaction within own environment Comprehensive and holistic assessment and treatment of functional activities of daily living and non-motor issues: Practical assistance Self care (eating, drinking, washing and dressing) Domestic activities (cleaning, shopping etc) Functional mobility, transfers and transport Leisure and work Environment (ramps, rails) Emotional assistance Cognition Mood Sleep Carer strain Advice and education
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Speech and Language Therapist Can advise on: Speech Exercises and techniques to help PwP control their breathing and pace their speech Lee Silverman Voice Treatment4 Maintaining and improving the volume, clarity and expression of the voice Body and environment Improving facial expression and body language Posture and positioning The best environment for speech and communication
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Deep Brain Stimulation Facts & Figures Deep brain stimulation costs: £25,000 in the first year – this includes assessment, surgery and follow up appointment. £12,000 for a battery change – which is every 3-5 years South Central region does 15 operations per annum It is a postcode lottery Half the patients selected for DBS are turned down – due to lack of PCT funding, or not meeting the suitability criteria
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Drug treatments for Parkinson’s Levodopa Dopamine agonists MAO-B inhibitors COMT inhibitors Glutamate antagonist Anticholinerginics
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Levodopa = replaces missing Dopamine Sinemet (Co-Careldopa) Madopar (Co-Beneldopa) Stalevo (Combination drug) The most commonly prescribed Dopamine Agonists = Directly stimulates parts of Brain where Dopomine works Bromocriptine (Parlodel) Pergolide (Celance) Cabergoline (Cabaser) Pramipexole (Mirapexin) Ropinirole (Requip) Rotigotine (Neupro) Apomorphine (APO-go) MAO-B Inhibitors = blocks enzyme which breaks down Dopamine in the Brain Selegiline (Eldepryl, Zelapar) Rasagiline (Azilect) COMT Inhibitors = blocks an enzyme which breaks down Levodopa Entacapone (Comtess) Tolcapone (Tasmar) Anticholinergics = blocks messages to the Brain Benztropine (Cogentin) Orphenadrine (Disipal) Procyclidine (Kemadrin, Arpicolin) Trihexyphenidyl (Artane, Agitane, Broflex) Others Amantadine (Symmetrel)
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Common medications Levodopa is converted to dopamine and so replaces this substance which is in short supply in the body. Sinemet ( co-careldopa)and Madopar (co-beneldopa) are the most common brands. Both come in a variety of strengths Both come in slow release formulations (which can not be crushed). Only Madopar comes in a dispersible formulation Stalevo is a combination of co-careldopa and Entacapone and is helpful for patients whose medication “wears off” Side effects -short term- nausea, postural hypotension, hallucinations Long term- wearing off, difficulty maintaining optimal dose, involuntary movements (dyskinesia)
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DOSAGE METHODS & SIDE EFFECTS Most Drugs are TABLET form , CARE NOT TO CRUSH – controlled release Drugs, although Madopar may be dispersible All P D Drugs have potential side effects inc. excessive day time sleepiness, nausea, postural hypotension, hallucinations, impulsive behaviours, postural oedema LEVODOPA = replaces missing Dopamine – (care in relation to mealtimes – protein inhibits absorption) Sinemet (Co-Careldopa) Madopar (Co-Beneldopa) Are the most Commonly Prescribed Stalevo Combination drug Dopamine Agonists = Directly stimulates parts of Brain where Dopomine works Bromocriptine (Parlodel) Pergolide (Celance) Cabergoline (Cabaser) (Not often prescribed due to side effects re heart & lung valves) Pramipexole (Mirapexin) CAN NOW BE TAKEN AS A ONCE A DAY TABLET Ropinirole (Requip) TABLET FORM CAN BE TAKEN ONCE A DAY Apomorphine (APO-go) PUMP/SYRINGE Rotigotine (Neupro) PATCH MAO-B Inhibitors = Blocks enzyme which breaks down Dopamine in the Brain Selegiline (Eldepryl, Zelapar) Rasagiline (Azilect) Anticholinergics = Blocks the Stillness messages to the Brain (acetylcholine) Benztropine (Cogentin) Orphenadrine (Disipal) Procyclidine (Kemadrin, Arpicolin) Trihexyphenidyl (Artane, Agitane, Broflex) COMT Inhibitors = Blocks an enzyme which breaks down Levodopa Entacapone (Comtess) Tolcapone (Tasmar) Others Amantadine (Symmetrel)
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Common medications(2) Dopamine agonists- these mimic dopamine at the receptor site helping to send the signals to the muscles therefore relieving symptoms. Ergot-derived such as Cabergoline, pergolide use with caution as increased risk fibrosis in heart valves. Non-ergot such as Ropinirole, Rotigotine, Pramipexole Sub-cutaneous medication apomorphine (complex patients) Transdermal patch option of Rotigotine may be an option when patient unable to swallow. Common side-effects- day time sleepiness, nausea, postural hypotension, hallucinations, postural oedema and impulse control disorders.
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Common medications (3) Other groups include MAOB inhibitors (rasagiline, selegiline) and COMT inhibitors (entacapone, tolcapone) and amantadine. COMT inhibitors can cause gastro-intestinal disturbance. Rivastigmine- for Parkinson’s disease dementia Quetiapine- used for hallucinations
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Long term Drug therapy does not improve the disease progression, but it does improve the patients quality of life. 70% of patients will get some cognitive decline. This may lead to a diagnosis of dementia. PD medications can cause hallucinations (but hallucinations can also be a symptom of dementia.) Potential deterioration in ability to perform ADLs May require social support or care home
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Challenges of medication “Honeymoon period” Fluctuations in response (‘on-off’ effect) Wearing off Nightmares/hallucinations/confusion Impulsive and compulsive behaviour Involuntary movements (dyskinesia)
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Continuous Dopaminergic Stimulation - CDS ON OFF Dyskinesia Efficacy Early Mid Late 8 hours 4 hours 2 hours
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Get it on Time – Case Study I was promised in the first place that I could self-medicate but no way would they let me. I was told pretty quickly that, to the staff my medication times were inconvenient to say the least. When the drugs trolley came round, they wouldn’t even let me have my dose and hang on to them until it was time to take them. They didn’t know what to do with me when my symptoms got worse, which I did warn them would happen. I was off nearly all of the time and what tablets I was taking had no effect at all…and my loo breaks which were normally reasonably easy at home with help, became an absolute nightmare.
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Time the medication to suit the individual December 2011, in the JOURNAL OF ADVANCED NURSING has shown that nearly 40% of observed drug administrations involved errors. Daiga Heisters, Head of Professional Engagement and Education at Parkinson’s UK, commented: “It’s vitally important that people with Parkinson’s get their medication on time, every time and we know this can be a particular problem when they are admitted to hospital.
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40% of Hospital Medicines ‘Involved an Error’, Able Magazine, 02.01.12 “Overall, the most common error involved medicines being given at the wrong time. Whilst in many cases it is unlikely that this would cause any harm, it did include 18 of 49 doses of anti-Parkinson’s medication being given over an hour late, which could have led to patients with Parkinson’s not having their symptoms adequately controlled and being unable to move, get out of bed or walk down a corridor. […] Daiga Heisters, Head of Professional Engagement and Education at Parkinson’s UK, commented: “It’s vitally important that people with Parkinson’s get their medication on time, every time and we know this can be a particular problem when they are admitted to hospital.”
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Access all available resources General practitioner (GP) Dietician Occupational therapist Social services Parkinson’s specialist nurse Person with Parkinson’s and carer Speech and language therapist Parkinson's UK Neurologist/ geriatrician Carers’ organisations Parkinson’s UK information and support worker Physiotherapist
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We’re the Parkinson’s support and research charity. We’re committed to finding a cure and improving life for everyone affected by Parkinson’s
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Parkinson’s UK Since the PDS was founded in 1969, we have spent approximately £45million on research In 2009. we spent almost £4.2 million on research projects The total research spend in 2009 was almost 22% of the total budget In 2010 we aim to invest £4.6 million in ground-breaking research projects (including the brain bank) At present, we are supporting approximately 90 research projects worth over £15 million¨ In 2009 The Monument Trust, (A Sainsbury Family Charitable Trust) Awarded the PD with the Monument Discovery Award to the sum of £5million over five years for research. A RESEARCHER, at the University of Southampton has just been awarded a grant for £34,000 from the Parkinson’s UK to look at whether non-invasive brain stimulation can help people with Parkinson’s to walk and turn.
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Confidential helpline: 0808 800 0303 Website: parkinsons.org.uk Information resources: parkinsons.org.uk/publications Professionals’ section of website and our Professionals’ Network: parkinsons.org.uk/professionals More than 360 local groups parkinsons.org.uk/localgroups Regional and country teams, including local information and support workers: parkinsons.org.uk/localtoyou Using Parkinson’s UK as a resource
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Information for people with Parkinson’s and professionals Booklets and Videos Up to 100 Factsheets The Parkinson magazine Professionals Packs Website – www.parkinsons.org.uk Using Parkinson’s UK as a Resource
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Local contacts Local Parkinson’s UK groups Parkinson’s specialist nurse Parkinson’s UK regional or country team, including: Information and support workers Education and training officer Regional manager
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Information and Support Worker Up to date information on Parkinson's Emotional support Info & help regarding benefits Info and links to local services A supporting voice Links to the Parkinson’s UK services
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Local Contacts Information & Support Worker Sue Thompson 0844 225 3759 Portsmouth Branch Currently recruiting Fareham Branch Currently recruiting Parkinson’s Nurse Specialist Sandra Jury 02392 683450 Portsmouth Linda Shaw 01329 224533 Fareham Regional Manager Caroline Bartlett 08442253670
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Sudhansu
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Contacts for North Hants Information and Support Worker North Hampshire Anne Denton Tel: 0844225 3797 Farnborough group: 3rd Tuesday of month. 7.30-9.30pm Day Centre adjoining Japonica Court. Shawfield Rd. Ash. GU12 6QX Secretary: Lyn White 01252 657027 Chair: Alan McMichael 01252 512623 Alton group: 3rd Wednesday of month. 2-4pm Alton Community Hospital. Chawton Park Road. Day room of Inwood ward – 1st floor. GU34 1RJ Secretary: Ginny Frith 01420 84732
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Local Contacts Information & Support Worker Hampshire Anne Denton T 08442253797 North Rosemary Smith T 0844 225 3678 South Southampton Branch Mary Shorter 02380449652 Winchester Branch Myra Clare 01962 883921 PD Nurse Specialist Sheena Morgan 02380286404 Ann Martin 02380296214 Regional Manager Caroline Bartlett 08442253670
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Local Contacts Information & Support Worker Kay Andrews 0844 225 3676 Maidenhead/Slough Branch Ray Peake 01628 488087 PD Nurse Specialist Andrew Houghton 01753638783 & Debra Vincent Scott 01344623333 ext 7706 Regional Manager Caroline Bartlett 08442253670
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Local Contacts Information & Support Worker Rosemary Smith 07900405853 Romsey Branch/ Group Penny Bonnor-Morris 01794 522283 Southampton & Southampton Early Onset Mary Shorter 02380 449652 PD Nurse Specialist Ann Martin 02380 296214 PD Nurse Specialist Lyndhurst Sheena Morgan 02380 286404 Regional Manager Caroline Bartlett 08442253670
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Local Contacts Information & Support Worker Rosemary Smith 07900405853 Isle of Wight Branch/ Group Ron Tweedie 01983 884913 PD Nurse Specialist Carolyn McCormack 01983 552469 Regional Manager Caroline Bartlett 08442253670
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Local Contacts Information & Support Worker Rosemary Smith 07900405853 Isle of Wight Branch/ Group Ron Tweedie 01983 884913 PD Nurse Specialist Carolyn McCormack 01983 552469 Regional Manager Caroline Bartlett 08442253670
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LOCAL CONTACTS Information & Support Worker Anne Denton T 08442253797 North Hants Basingstoke Branch Stuart Banks 01256 364653 PD Nurse Specialist Pat Dixon T 01256376476 Regional Manager Caroline Bartlett 08442253670
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LOCAL CONTACTS Information & Support Worker Berkshire Ann Jefferies Berks West 0844 2253758 Sarah Dolan Berks West 0844 2253677 Delia Wells Berks & Oxford 0844 2253679 Bracknell Branch Newbury Branch Ellen Pirie 01344 481759 Eric Rein 01635 600330 Reading/Newbury PEPs (younger) Briony Cooke 01189 574939 PD Nurse Specialist Karen Guy RG1 01183226855 Laura Witchalls RG41 (PT) 01635876272 Regional Manager Caroline Bartlett 08442253670
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Local Support Isle of Wight Local Branch The Isle of Wight branch offers the chance for you to meet other people affected by Parkinson’s on the island, get information and take part in activities on offer. For more information, contact Ron Tweedie on 01983 884913. Parkinson’s Nurse Specialist The Parkinson’s Nurse Specialist is a community based nurse who has received extra training in the management of Parkinson’s. Her role is to support people with Parkinson’s, their families and/or carers. Contact Carolyn McCormack on 01983 552469 or email IWPDNS@iow.nhs.uk Information and Support Service The Isle of Wight Information and Support worker provides one-to-one information and support including benefits advice, emotional support and links to services. Contact Rosemary Smith on 0844 225 3678 (local rate) or email rsmith@parkinsons.org.uk Parkinson’s UK confidential helpline 0808 800 0303 (free-phone)
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Local Contacts Information & Support Worker Kay Andrews 0844 225 3676 Maidenhead/Slough Branch Ray Peake 01628 488087 PD Nurse Specialist Andrew Houghton & Debra Vincent Scott 01753 638783 01344 623333 Regional Manager Caroline Bartlett 08442253670
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LOCAL CONTACTS Information & Support Worker Andover & Newbury Ann Jefferies 0844 2253758 Petersfield Branch/ Group Gill Puttick 01428 725235 Andover Branch/ Group Jean Pittfield 01264 735343 PD Nurse Specialist Pat Dixon Basingstoke 01256 376476 Regional Manager Caroline Bartlett 08442253670
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LOCAL CONTACTS Information & Support Worker Anne Denton 0844 2253797 Farnborough Branch Alan F McMichael 01252 512263 PD Nurse Specialist Tessa Bennett T01483783481 no longer in area Regional Manager Caroline Bartlett 08442253670
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LOCAL CONTACTS Information & Support Worker Anita Browne 0844 225 3675 Milton Keynes Branch Pamela Purton 01908 583562 PD Nurse Specialist Peter Smith 01908650425 Liz Scott 01494 425788 Regional Manager Caroline Bartlett 08442253670
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Local Contacts Information & Support Worker Delia Wells 0844 225 3679 Oxford Branch/ Group Campbell Ferguson 01865 331704 Banbury Branch Mick Terry 01295710822 PD Nurse Specialist Angela Weir 01885234048 Jackie Burnham 01295819112 Regional Manager Caroline Bartlett 08442253670
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Local Contacts Information & Support Worker Anita Browne 0844 225 3675 Aylesbury Branch Dorothy Clark 01280 848094 Amersham Branch David Besley 01494 813117 Milton Keynes Pamela Purton 01908 583562 Parkinson’s Nurse Specialist Liz Scott 01494 425788 Regional Manager Caroline Bartlett 08442253670
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Case Studies
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The cases: what needs to be done? Issues to consider : Communication Mobility/dexterity Personal/emotional/social Financial Carer’s needs Looking at the case studies, identify: The challenges and difficulties How you could help, or who could you refer on to, to meet each need and improve quality of life?
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John is 68 years old and has had Parkinson’s for several years. He takes a number of medications, several times a day to control his symptoms. John wants you to know some of the challenges he faces on a typical day and wonders if there is anything you can do to help. The consultation starts badly; John seems to be stuck in the doorway and is unable to move for several minutes. When he eventually sits down and starts to talk to you his voice is very quiet and you do not hear all that he is saying. You begin to wonder if he understands everything you are saying to him as he often takes a long time to respond to your questions. John tells you that he has problems going to the toilet and that he seems to be constipated most of the time. He consequently spends a lot of time sitting on the toilet but when he gets up he often feels dizzy and has been known to fall back down again. He admits he has also fallen over on several occasions when out and about. His dizziness, sudden freezing and fear of falling have made him very nervous of going out at all. He says he especially hates being in town or where there might be crowds of people. He is tired for most of the day yet he has real problems sleeping at night; he frequently wakes and can’t get back to sleep as he feels stuck to the bed. His wife is losing sleep as he has to nudge her to wake and help him to turn over. John also gets a lot of pain, particularly around his shoulders. He says it often starts around the back of his neck and seems to spread to the back of his head and his shoulders. He admits to you that whilst he had always been a positive person and initially resolved that he would not let Parkinson’s ruin his life, he now feels he is a burden to his wife and family and wonders if there is any point in carrying on with life. John
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Mary is 60 and is married to Gerald, 65. Gerald has had Parkinson’s for over 5 years and takes a number of medications to help control his symptoms. Mary wants you to know some of the challenges they face on a typical day and wonders if there is anything you can do to help. Mary tells you that Gerald has deteriorated noticeably over the past few months. He is now becoming incontinent which seems worse at night when he often wakes wanting to go to the toilet but is so slow that he is unable to get the toilet in time. Mealtimes are now very difficult as he seems to have trouble swallowing his food, often coughing and choking whilst he eats. To make mealtimes even worse he often dribbles food and drink from his mouth. Mary says that between meals he also has a tendency to dribble down his chin which is not only embarrassing for Gerald but means his chin is very sore most of the time. She says he is always complaining that she is going deaf and says that she does not listen to him anymore. Mary then tells you that she is starting to get concerned about his behaviour. He has recently started making sexual advances to her in a way he has never done before, suggesting things that make her feel uneasy. He has actually started making inappropriate sexual comments to other women which he doesn’t seem to notice are offensive. Mary then admits to you that she thinks he is starting to become senile. She says he sometimes forgets where he is and does not seem to even recognise her. She ends her tale in tears and says that she has had enough. Mary and Gerald
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Case Study - Bert Bert is 80 years old and has had Parkinson's Disease for 15 years. Elsie, his wife, has been caring for Bert throughout although suffering from painful arthritis and having had a hip replacement operation eighteen months ago. Lately things seem to have been deteriorating. Bert complains that she is going deaf and does not listen to him anymore. He is frustrated with double vision and increasing difficulty in getting around. More and more he seems to be “freezing” for no apparent reason. No matter how hard Elsie pushes and pulls him she is unable to free him up. Elsie confided in a friend last week that she thought Bert was suffering from dementia. She said she was at the end of her tether and wanted to end it all.
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Case Study - Joan Joan is an 86 year old single lady who has had Parkinson's for 18 years. A retired dance teacher who ran her own dance school, she is an intelligent, albeit temperamental, individual. Three years ago she made the move into full time care. Although this move resulted in a loss of independence, she settled in well, was popular and good company for the other residents. Lately she has not been her old self; she seems depressed, has lost her appetite, and is complaining of insomnia and fitful sleep with nightmares and hallucinations. The staff fear she may be dementing but some days she seems on good form and able to cope. Yesterday Joan had a fairly serious fall when another resident attempted to hurry her along the corridor. At the time, Joan was frozen to the spot and could not move. Joan has now completely withdrawn inside herself and has not talked to anyone.
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Case Study - Fred You regularly provide care at the home of Fred and Doris. Fred is 68 years old and lives with his 70-year-old wife, Doris. Fred has had Parkinson's for over seven years and takes a number of medications several times a day to help control his symptoms. Whilst looking after Fred in his home, you have noticed that he is excessively messy when eating, spilling food on the floor due to a lack of control of his limbs, and between meals he has a tendency to dribble down his chin. He is unaware of this, but Doris hates it. His chin is very red and fiery. Fred has little apparent quality of life and in the last two years has given up his lifelong hobby of golf. Doris is tired most of the time because she has to help him out of bed to the toilet at least once a night. They have had to move into separate beds as Fred has a tendency to kick and punch out in his sleep. He constantly complains of constipation. Recently he has been ‘seeing’ people who are not there and occasionally talks to them, which can be embarrassing in company. He also sometimes makes unacceptable sexual comments to female visitors. Many friends have now given up visiting because they can’t cope with his behaviour. A situation arose recently while you were looking after Fred. He was unable to remove his tablet from the blister pack and he asked you to do it for him. As your manager has told you that care staff must not help clients with their medication you had to refuse and contact his GP Practice Nurse. The nurse arrived two hours later, and by then Fred was very immobile. On her return, Doris became very distressed at the whole situation and can’t understand what the problem could have been.
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Case Study - Fred You regularly provide care at the home of Fred and Doris. Fred is 68 years old and lives with his 70-year-old wife, Doris. Fred has had Parkinson's for over 7 years and has been taking a number of medications, several times a day to control his symptoms. Whilst looking after Fred in his home, you have noticed that he is excessively messy when eating; spilling food on the floor due to a lack of control of his limbs and between meals he has a tendency to dribble down his chin. He is unaware of this, but Doris hates it. His chin is very red and fiery. Fred has little apparent quality of life and in the last two years has given up his lifelong hobby of golf. Doris is tired most of the time because she has to help him out of bed to the toilet at least once a night. They have had to move into separate beds as Fred has a tendency to kick and punch out in his sleep. He constantly complains of constipation. Recently he has been “seeing” people who are not there and occasionally talks to them, which can be embarrassing in company. Many friends have now given up visiting because they cannot cope with his behaviour. A situation arose recently while you were looking after Fred. He was unable to remove his tablet from the blister pack and he asked you to do it for him. As your manager has told you that care staff must not help clients with their medication you had to refuse and contact his GP Practice Nurse. The nurse arrived 2 hours later, by when Fred was very immobile. On her return, Doris became very distressed at the whole situation and can’t understand what the problem could have been.
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Case Study - Tom Tom is 74 and has had Parkinson's for six years. He moved into a local residential home six months ago after his wife died. Tom seems to cope fairly well most of the time but at night he is often distressed and attempts to wander. He is now often confused and hallucinating. He thinks nets cover his body and particularly his mouth. He has difficulty swallowing, often choking. Meal times are difficult and staff find him very challenging. He is slow drinking and often refuses solid food saying he is worried that he will choke. He pushes the food around his plate. He is now trying to avoid the dining hall and the other residents, having previously appeared to enjoy their company.Tom was noted as having been a messy eater. His dentures are ill fitting, making chewing difficult at the best of times. The staff have asked that he sees a consultant specialist, but the GP insists that this is unnecessary as he has always treated Tom. Tom has also asked to see a specialist. At a recent staff meeting, great concern was expressed about Tom. He has lost weight and generally he appears to be deteriorating.
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Case Study - Tom Tom is 74 and has Parkinson's disease. He moved into a local residential home six months ago after his wife died. Tom seems to cope fairly well most of the time but at night he is often distressed and attempts to wander. He is now often confused and hallucinating. He thinks nets cover his body and particularly his mouth. He has difficulty swallowing, often choking. Meal times are difficult and staff find him very frustrating. He is slow drinking and often refuses solid food saying he is worried that he will choke. He pushes the food around his plate. He is now trying to avoid the dining hall and the other residents, having previously appeared to enjoy their company.Tom was noted as having been a messy eater. His dentures are ill fitting, making chewing difficult at the best of times. The staff have asked that he sees a consultant specialist, but the GP insists that this is unnecessary. Tom has also asked to see a specialist. At a recent staff meeting, great concern was expressed about Tom. He has lost weight and generally he appears to be deteriorating.
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Ahmed has been a resident in a local care home for six months. He has had Parkinson’s for eight years. His wife died nine months ago and his family are all abroad. He copes well but is getting slower and often sits alone. Staff have recently changed and newer care staff find him difficult. He constantly demands his tablets at set times and these do not fit their routine. At mealtimes, Ahmed is very slow and a new staff nurse has decided that, as he is being deliberately uncooperative, he will not be allowed to go on outings if he cannot finish meals with the other residents. He loves puddings but often these are served while he is still eating his main course. Eating can be messy and food often escapes from his mouth. He is now choking a lot. Other residents are complaining of sitting with him. They are afraid of his choking and they dislike the mess, so staff have arranged that he eats alone. Ahmed loves the bus outings but is now rarely included. Recently, getting to the toilet is becoming a problem, particularly at night. He often ‘freezes’ in the corridor or seems to be stuck in the toilet. Staff have now decided that he may need night-time catheterisation. However, a pattern has emerged which they do not understand - he rarely has problems when Team C is on duty and they find him co-operative and often chatty. Case Study - Ahmed
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Ahmed has been a resident in a local care home for six months. He has had Parkinson’s for eight years. His wife died nine months ago and his family are all abroad. He copes well but is getting slower and often sits alone. Staff have recently changed and newer care staff find him difficult. He constantly demands his tablets at set times and these do not fit their routine. At mealtimes, Ahmed is very slow and a new staff nurse has decided that, as he is being deliberately uncooperative, he will not be allowed to go on outings if he cannot finish meals with the other residents. He loves puddings but often these are served while he is still eating his main course. Eating can be messy and food often escapes from his mouth. He is now choking a lot. Other residents are complaining of sitting with him. They are afraid of his choking and they dislike the mess, so staff have arranged that he eats alone. Ahmed loves the bus outings but is now rarely included. Recently, getting to the toilet is becoming a problem, particularly at night. He often “freezes” in the corridor or seems to be stuck in the toilet. Staff have now decided that he may need night-time catheterisation. However, a pattern has emerged which they do not understand; He rarely has problems when Team C is on duty and they find him co-operative and often chatty. Case Study - Ahmed
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Case study - Annie Annie is 58, and lives alone at home. She was diagnosed with Parkinson’s nine years ago. She worked as an office cleaner until three years ago, when she had to retire due to her deteriorating health. She is on a very low income, and her home is a private rented flat with poor facilities. She has no surviving family. She is struggling to look after herself, has reluctantly accepted some home care, but care staff find her behaviour very challenging at times. She often has very extreme mood swings, and gets very annoyed when she says staff are not helping her to take her medication on time. Staff have also often found her obsessively re-arranging her clothes in her wardrobe, and repeatedly doing this. There have been occasions recently when new staff have not been fully aware of her medication needs. Some staff have also commented to their manager that at times they think Annie could well manage to do more herself, and arrive to find her very active and apparently quite self sufficient. Staff are particularly concerned about her hallucinations which she finds very frightening. She rarely goes out and has a poor diet of ready meals. She is often very constipated, and also complains about the problems she has turning over in bed. Most mornings she has pain in her limbs and around her shoulders. As far as you are aware she last saw a consultant neurologist over a year ago, and has not had any support from other health professionals.
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How you can make a difference Encourage appropriate referrals: consultant/therapists/Parkinson’s nurse/Parkinson’s UK Understand fluctuations Recognise the ‘on-off’ phenomenon Respond to changing care needs Maintain their routine and make sure patients get their medication on time – Get It On Time Remember that everyone is different
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Karen
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“Look beyond the mask” “Give a little more time!”
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Appropriate care to stage, not age Parkinson’s is considered in stages, each stage has different management issues and priorities: diagnosis maintenance complex palliative The key message is to consider the person and their stage of Parkinson’s in light of their abilities and their needs.
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We’re the Parkinson’s support and research charity. We’re committed to finding a cure and improving life for everyone affected by Parkinson’s Parkinson’s UK
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Common medications Levodopa is converted to dopamine and so replaces this substance which is in short supply in the body. Sinemet ( co-careldopa)and Madopar (co-beneldopa) are the most common brands. Both come in a variety of strengths Both come in slow release formulations (which can not be crushed). Only Madopar comes in a dispersible formulation Stalevo is a combination of co-careldopa and Entacapone and is helpful for patients whose medication “wears off” Side effects -short term- nausea, postural hypotension, hallucinations Long term- wearing off, difficulty maintaining optimal dose, involuntary movements (dyskinesia)
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Common medications(2) Dopamine agonists- these mimic dopamine at the receptor site helping to send the signals to the muscles therefore relieving symptoms. Ergot-derived such as Cabergoline, pergolide use with caution as increased risk fibrosis in heart valves. Non-ergot such as Ropinirole, Rotigotine, Pramipexole Sub-cutaneous medication apomorphine (complex patients) Transdermal patch option of Rotigotine may be an option when patient unable to swallow. Common side-effects- day time sleepiness, nausea, postural hypotension, hallucinations, postural oedema and impulse control disorders.
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Common medications (3) Other groups include MAOB inhibitors (rasagiline, selegiline) and COMT inhibitors (entacapone, tolcapone) and amantadine. COMT inhibitors can cause gastro-intestinal disturbance. Rivastigmine- for Parkinson’s disease dementia Quetiapine- used for hallucinations
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Long term Drug therapy does not improve the disease progression, but it does improve the patients quality of life. 70% of patients will get some cognitive decline. This may lead to a diagnosis of dementia. PD medications can cause hallucinations (but hallucinations can also be a symptom of dementia.) Potential deterioration in ability to perform ADLs May require social support or care home
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Vascular Parkinsonism main symptoms of Parkinson’s – tremor, rigidity and slowness of movement – are also the main symptoms of a number of conditions that are grouped together under the term ‘parkinsonism’. Parkinson’s disease is the most common form of parkinsonism and is sometimes referred to as idiopathic Parkinson’s disease (IPD), which means its cause is unknown. This accounts for only about 85% of all people with parkinsonism. However, if specialists see someone with unusual symptoms or someone who is not responding to anti-Parkinson’s drugs, they may take these as pointers that the person might not have IPD and will investigate further. When this is the case, the term ‘atypical parkinsonism’ is often used. See the PDS information sheet Parkinsonism. Vascular, or arteriosclerotic, parkinsonism (VP) is one of the atypical forms of parkinsonism. The most important risk factors for developing VP are hypertension and diabetes, but a cerebrovascular accident, cardiac disease or carotid artery pathology are probably also involved in the development of VP. In the classical type of VP, difficulty in walking is the most important initial complaint. Therefore, the classical type is also called lower-half or lower-body parkinsonism. The gait disorder associated with this condition is characterised by shuffling, short steps, start and turn problems, and moderate balance problems. Additionally, people with VP usually swing their arms less than those with IPD. The following symptoms may also occur: hypomimia (reduced facial expression), articulation or swallowing problems, cognitive problems and incontinence of urine or faeces. When the disease progresses, more severe and generalised signs of VP may occur, and may also involve the upper body. In one European study, VP was present in only 3% of all patients with parkinsonism, but it is likely that the real figure is higher. Additional diagnostic techniques It is hoped that there will be advances in some diagnostic techniques in the near future to assist doctors in diagnosing VP and reduce the numbers of people who are misdiagnosed. These techniques include MRI brain scanning and DaT SPECT SCAN or DaTSCAN. Further information on DaTSCAN can be found in the PDS information sheet Scans and Parkinson’s. None of these tests alone can make a definitive diagnosis of VP. However, sometimes, they exclude a diagnosis of VP and, sometimes (either used alone or combined as a ‘battery’ of tests), they can strengthen the case for it, but only when considered together with the person’s medical history and clinical findings.
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Every hour, someone in the UK is told they have Parkinson’s. Because we’re here, no one has to face Parkinson’s alone We bring people with Parkinson’s, their carers and families together via our network of local groups Our website and free confidential helpline Specialist nurses, our supporters and staff provide information and training on every aspect of Parkinson’s As the UK’s Parkinson’s support and research charity we’re leading the work to find a cure, and we’re closer than ever We also campaign to change attitudes and demand better services Our work is totally dependent on donations Help us find a cure and improve life for everyone affected by Parkinson’s Parkinson’s UK Free* confidential helpline 0808 800 0303 (Monday to Friday 9am–8pm, Saturday 10am–2pm). Interpreting available. Text Relay 18001 0808 800 0303 (for textphone users only) hello@parkinsons.org.uk parkinsons.org.uk
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Education delivered for year - running total at:31 December 2012 Summary figures 1350 = Total number of sessions delivered so far this year 17990 = Total number of people educated 1295 = Total number of nursing and care homes educated 186 = Total number of general practices educated 392 = Total number of actual GPs educated 876 = Total number of domiciliary care agencies educated 1393 = Total number of social care assessors educated 347 = Total number of sessions delivered by volunteer educators
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2. Detailed breakdown by region Education sessions delivered North East 61 North West 68 Yorkshire & Humber 91 West Midlands 76 East Midlands 86 Eastern England 86 South West 126 South Central 123 South East 26 London 58 Scotland 57 Northern Ireland 69 Wales 76 Other Total sessions delivered 1003
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2. Detailed breakdown by region cont/… Number of participants educated North East 692 North West 992 Yorkshire & Humber 1316 West Midlands 1078 East Midlands 1677 Eastern England 1147 South West 1779 South Central 1851 South East 375 London 959 Scotland 863 Northern Ireland 1155 Wales1105 Other Total educated 14989