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General practitioners caring for people with dementia and their carers

General practitioners caring for people with dementia and their carers. Dr Catherine Speechly 1 , Ms Belinda Giles 1 , Prof Charles-Bridges-Webb 1 , Dr Yvonne Zurynski 2 , Dr Navaz Hiramanek 3 1 RACGP NSW & ACT Faculty, Projects Research & Development Unit 2 Primary Health Institute

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General practitioners caring for people with dementia and their carers

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  1. General practitioners caring for people with dementia and their carers Dr Catherine Speechly1, Ms Belinda Giles1, Prof Charles-Bridges-Webb1, Dr Yvonne Zurynski2, Dr Navaz Hiramanek3 1RACGP NSW & ACT Faculty, Projects Research & Development Unit 2Primary Health Institute 3University of Sydney, Discipline of General Practice

  2. Background • Whilst developing clinical guidelines for GP care of patients with dementia living in the community we could find little information about the current management and status of this group • GPs are a common first point of contact for patients with dementia and their carers

  3. Background The Bettering the Evaluation And Care of Health (BEACH) study of general practice in 1998-2000 showed: • Only 21% of 3000 GPs reported any encounter with a patient at which dementia was treated within their reported 100 patient encounters. • 39% of these encounters were in a nursing home

  4. Aim • To develop an educational module for GPs which included clinical audit of practice and an educational workshop • To determine carer health, level of burden and satisfaction with services • To develop a pamphlet detailing the help carers might seek from a GP Funded by the Bernard Judd Foundation

  5. Subjects • GPs - self-selected within the Illawarra Division of General Practice, NSW • Patients – clinical diagnosis of dementia, still living in the community • Carer – primary carer of person with dementia, known to GP

  6. Clinical Audit • Few GPs participated in the audit • GPs (n=8) audited their clinical care of patients with dementia (n=25) • The instrument was based on the RACGP and NSW Health “Guidelines for the Care of Patients with Dementia in General Practice”

  7. Educational workshops Workshops for GPs • Quiz format based on the Guidelines • Questions with referral to Guidelines for answers • Discussion of audit findings GP participation and evaluation good

  8. Carer Questionnaire -Recruited through GP (n=30) -Recruited through Alzheimer's Australia (n=77) • Carer demographics • Health • Satisfaction with community services • Level of Burden (22-item version of the Zarit Burden Scale)

  9. Audit Results • 25 patients aged between 72-91 • 56% Male • Type of dementia: • Alzheimer's 38% • Vascular 26% • Uncertain 24% • Other 12%

  10. Audit Results • Severity of dementia • Mild 33% • Moderate 54% • Severe 12% • MMSE not known to GP 56% • Duration of dementia 3+yrs 31% • Medication for dementia 24%

  11. Audit Results • Comorbidities 92% • Three or more conditions 52% • Hypertension 44% • Diabetes 15% • Depression 38% • Other psychiatric diagnosis 20%

  12. Audit Results • General health assessments performed for 2/3 patients in past 12 months • Home safety not assessed for 44% in past 12 months • Legal matters discussed with patient or family for less than half (driving, enduring power of attorney or guardianship, will)

  13. Audit Results • Most common behavioural problems • Poor memory 44% • Reduced emotional control 42% • Poor thinking/planning 36% • A management strategy in place for the problem for fewer than ½ the patients

  14. Audit Results • Most patients needed at least some assistance with activities of daily living • Bathing and dressing 52% • Walking 40% • Toileting 36% • Feeding 28%

  15. Carer Questionnaire • 107 carers (30 GP, 77 AA) • Female 80% • Married 82% • Spouses 68%, sons/daughters 26% • Caring for: • 2-5 years 62% • Over 5 years 23% • Under 2 years 15% • Most lived in or visited daily 84% • Most had same GP as patient 70%

  16. Carers – Services used • Commonly used services • Aged care assessment team 48% • Alzheimer's Association* 44% • Respite care 30% • Daycare 24% • Carer support group 24% • 23% mentioned a service that would have been useful but not available • Most carers felt supported by their GP in their carer role (86%) (*more often AA carers)

  17. Carers – Health • Most carers said that being a carer had affected their health (61%) • All carers had medical problems • Arthritis 54% • Hypertension 47% • Anxiety 44% • Depression 36%

  18. Carers - Health How caring affected carers’ health: • “Being a carer has caused high blood pressure and lots of stress” • “I am taking (antidepressants) to help me in the care for my wife” • “Constantly tired, stressed, lonely, isolated“ • “I have been unable to have an operation last year as my husband will not go to respite” • “Muscle strains, back pains caused by lifting, lack of opportunity for regular exercise, sleep deprivation”

  19. Carers – Burden • Zarit Burden Scale (22-item) • Person with dementia dependent on them 85% • Afraid for what the future held for the person 59% • Not enough time for self/social life suffered 45% • Frequently or always felt burdened by caring 39% • Felt they had lost control of their lives 34%

  20. Carers - Burden Zarit Burden Scale – higher score indicates greater degree of burden (n=107) • 0-20 Little or no burden 10% • 21-40 Mild-moderate burden 26% • 41-60 Moderate-severe burden 49% • 61-88 Severe burden 8% • Missing 7%

  21. Carers - Burden All carers (n=107) – Level of burden

  22. Carers - Burden AA Carers (n=77) – Level of Burden

  23. Carers - Burden GP Carers (n=30) – Level of Burden

  24. Pamphlet • We developed a pamphlet as a guide to the type of help carers might seek from their GP • Currently sourcing funding for pamphlet to be distributed to GPs and carers www.racgp.org.au/dementiacarer

  25. Pamphlet • Primary sources of information • “The carer experience – an essential guide for carers of people with dementia” Commonwealth of Australia, 2002 • Results of carer questionnaire • Focus groups with carers and draft pamphlet with assistance of Alzheimer's Australia

  26. Summary • GP care of patients with dementia – clinical/daily living activities attended to more commonly than legal issues • Low take-up of audit means it is not representative • However these were GPs with an interest • Educational workshops were well received • GPs stated it was a difficult but important topic • A very small part of most doctors’ practice

  27. Summary • Carers demonstrated a high level of burden and a belief that caring had affected their health • Most cared daily for at least 2 years • Affecting mental as well as physical health

  28. Contact • Prof Charles Bridges-Webb – Director • Dr Catherine Speechly – Research Officer Projects Research and Development Unit NSW & ACT Faculty RACGP Email nsw.research@racgp.org.au Ph: 9886 4749/ 9886 4735

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