Improving access to services for people with dementia

1
Improving access to services for people with
dementia

• Joanna Murray
• Institute of Psychiatry
• Kings College London

2

• Grant-holders
• Sube Banerjee, Joanna Murray, Dinesh Bhugra,
  Andre Tylee, Peter Huxley
• Research workers
• Vanessa Lawrence, Kritika Samsi
• Funder
• Department of Health

3
Background

• Majority of care for PWD and their carers occurs
  in primary care
• Integrated health social care essential1
• Enhanced role for memory clinics1 2
• Early diagnosis fundamental1 2
• Equality of access individualised care2
• Dementia services often culturally inappropriate
  for BME older people3
• 1NSF DH 2001 2Audit Commission 2001/2 3Social
  Services Directorate 1998

4
.more background

• 10-15 PWD referred to specialist services but
  ethnic elders underrepresented
• Ethnic elders receive diagnosis at later stage
  less likely to access treatment or social care
• Diagnosis starts at home key role of families in
  pathways to care
• Poor understanding of how cultural beliefs
  values influence presentation, help-seeking
  referral

5
PATHWAYS TO CARE in DEMENTIA
Self/ others recognise problem
Informal support family priest peers
GP identifies problem
Decision to seek formal help
GP offers acceptable explanation
Patient/family accepts treatment/support
6
Influence of beliefs on help-seeking

• Lack of awareness of dementia
• Normalisation of changes in cognition,
  competence personality
• Stigma and shame of dementia, e.g.
• - as divine retribution
• - as a sign of filial abuse/neglect
• Preference for informal care
• Attitudes to services

7
Influence of health care professionals attitudes

• Poor understanding of dementia among GPs, nurses
  social care professionals
• Lack of clarity of GP role (e.g. screening,
  diagnosis, shared care, carer support)
• Little research on professionals attitudes

8
Aims of the research

• To investigate
• the attitudes and behaviour of older people,
  their relatives, primary and social care
  professionals concerning dementia
• the barriers and facilitators to accessing care
  and management of dementia
• cross-cultural issues in presentation,
  recognition and treatment of older adults with
  dementia

9
Study Design

• Individual in-depth interviews exploring
  attitudes, beliefs and behaviour
• Vignette used to facilitate discussion of
  sensitive issues
• Interviews tape recorded and transcribed verbatim
• Thematic analysis by 3 researchers

10
Samples

• Older people with a diagnosis of dementia
• Family carers of people with dementia
• Older people who do not have dementia
• Primary care professionals (GPs practice
  nurses)
• Social care professionals working with older
  adults

11
Recruitment

• Purposive sampling for diversity
• Participants recruited from secondary services in
  South London
• Carer support groups, newsletters
• Day centres for people with dementia
• Gate keepers as links into the community,
  particularly for hard to reach groups
• Religious cultural organisations

12
Interview Guide

• 3 different interview guides people with
  dementia carers older people without dementia
• Experience and attitudes towards memory problems
• Understanding of dementia
• Help-seeking pathway, service use and evaluation
• Coping strategies and informal support
• Caregiving role nature and attitude towards it

13
Vignette

• Mr D is 75 years old. He has become very
  forgetful. He confuses peoples names, even his
  own family. He often seems unable to remember
  things from one moment to the next. Yesterday,
  when he went to the market to buy food, he came
  back with nothing, having forgotten what he went
  out for. He repeats himself in conversation.
  Sometimes, when he goes out, he gets lost and has
  to be brought back by neighbours.

14
Participants

• 30 people with dementia (11 BC, 9 SA, 10 WB)
• 32 carers (10 BC, 10 SA, 12 WB)
• 28 older people without dementia (10 BC, 10 SA, 8
  WB)
• 23 primary care professionals (16 GPs, 7 PNs)
• 12 social care staff

15
FINDINGS

• 1. Attitudes of older people with dementia

16
Attitudes to their condition

• All participants explained memory problems in
  context of ageing
• 1/3 believed it was normal this helped to
  diffuse fear, stigma isolation
• Evaluated in terms of impact on valued roles,
  relationships, activities
• Coping strategy focus on preserved abilities, on
  what they feel able to do or do not have to do
• Tendency to minimise help needed - precludes
  self-help accepting support
• But 1/3 reported negative effect on mood

17
Cultural differences in attitudes

• Black Caribbean elders
• identified themselves as independent
• wished to limit reliance on family
• valued support of their peers
• more open about memory problems and more likely
  to seek help, BUT
• fear stigma of deterioration in brain
• fear about future support needs

18
Cultural differences in attitudes

• White British elders
• most likely to deny memory problems
• embarrassed about memory problems so avoided
  interaction felt inadequate
• concerned about becoming a burden or upsetting
  their spouse
• belief that they were contributing to their
  marriage or ADL was beneficial

19
Cultural differences in attitudes

• South Asian elders
• less conscious of progressive nature of their
  condition less concern about future
• confident and proud of family support
• belief that they were contributing to their
  marriage was beneficial

20
Attitudes to GP

• Majority regarded GP as supportive but useful
  only in accessing other services
• Reluctant to impose on GP needlessly
  prioritise physical health problems
• I suppose I should have gone to my GP but, as I
  say, she was doing quite well with all the other
  things. You cant expect too much. (WBD4)
• I think its because of me thinking like,
  thinking of it as nothingPerhaps take it simple.
  Keep it simple. I dont look at it as a sickness
  perhaps (BCD10)

21
Attitudes to GP

• GPs explain condition in context of ageing
• Because the doctor say you are old now, old
  people you are, in an old stage now, everything
  cant be like a young man. You are old but your
  memory is all right. Keep everything all right,
  stay home with your wife (SAD5)
• Sometimes reassuring but may lead to minimising
  or uncertainty
• No shes never told me that Im demented but I
  know it is, because what I..I..I read about,
  about when youre forgetful and what not and what
  not. I said probably its that but theyre not
  telling me (BCD1)

22
Attitudes to medication

• Some would take medication if offered because
  they trusted GP others feared side-effects
• 6 currently taking medication for memory problems
  (2 in each ethnic group)
• Circumspect but some positive appraisals
• I think to myself that I am improving a lot, I
  think sobecause a couple of months ago I know I
  dont think I wouldI would finish talk long
  time..I would finish and get everything in a
  muddle and cant get my thoughts. (BCD3)
• It helps to keep cold. cold, cold, brain to
  keep cold, not hot.dont think too much (SAD5)

23
Attitudes to day centres

• Less embarrassment stigma being with others who
  have similar problems
• I avoid going to people, especially former
  friends, unless I go to places where everyone
  has Alzheimers, all of them, everyone (SAD9)
• Almost all BC elders valued being in company at
  day centres long-established coping strategy to
  maintain mental health
• Most SA elders found day centres for PWD under
  stimulating
• Few WB elders attended day centres preferred to
  avoid strangers

24
Attitudes to home care

• Only one received personal care
• Participants minimised the help needed
• Services acceptable if they dont challenge
  valued roles (e.g. keeping a tidy home)
• Some SA elders interpreted offers of help as
  implying they lacked family support

25
Attitudes to residential care

• SA elders see them as irrelevant feel assured of
  family support
• WB elders see them as alternative to imposing
  burden on their families
• BC elders feared they might be a part of their
  future
• Faint belief that some good care homes exist

26

• 2. Attitudes of carers of older people with
  dementia

27
Care-giving ideologies

• Two ideologies identified on basis of core
  beliefs about the role of carer
• Traditional (17 9 SA, 5 BC, 3 WB)
• care-giving is natural, expected virtuous
• continuity, rewards, coping strategies, informal
  support, nature of role
• less role conflict but guilt about meeting own
  needs
• positive attitudes to services

28
Care-giving ideologies

• Non-traditional (15 1 SA, 5 BC, 8 WB)
• necessity not choice
• conflict over roles expectations of life
• relationship with PWD has been lost
• life disrupted on hold
• received less family support
• more negative attitudes to services

29
Service implications of carer ideologies

• Traditional carers
• Asking for help was seen as failure only sought
  help in crisis. Services need to support not
  supersede family roles.
• Non-traditional carers
• Need practical support to protect other roles
  reduce sense of conflict. Help to understand
  nature of dementia reappraise relationship with
  PWD. Planning for future care.

30
Aspects of good care

• Being listened to receiving a response to
  individual needs
• Being assured of available help before its
  needed
• Having one person to turn to with queries
  concerns
• Early provision of information (non-traditional
  carers)

31
Fighting for help

• Accessing services depended on the tenacity of
  carers
• Both traditional non-traditional carers
  experienced it as a constant battle to get
  information, advice practical assistance
• Decision to pursue services depended on whether
  the benefits outweighed the demoralising,
  embarrassing, stressful process

32
Carers attitudes to health care

• Majority felt GP had done all they could others
  felt GP dismissed problems as normal part of
  ageing or untreatable
• Most wanted rapid specialist referral but SA
  carers preferred GP to treat condition
• Positive experience of CMHT assessment
  explanation of diagnosis valued access to other
  services
• One to one CPN support most valued sense of
  collaboration reduced isolation

33
Carers attitudes to social care

• Day centres valued for helping PWD especially
  being with others with dementia
• SA BC carers believed PWD preferred to be with
  others of own ethnic group
• Home help regarded as regrettable necessity
  staff were rushed, unskilled, inexperienced
  uninterested no relationship formed with PWD
• Crossroads enormously valued everything home
  help was not (mature, capable, well-trained,
  interested). But fears it would change

34
Summary

• PWD evaluate their condition according to impact
  on valued roles. Services should help preserve
  these roles
• Embarrassment stigma lead to isolation
  socialising with other PWD those from same
  cultural group helps
• Fear of deterioration requires early care
  planning
• GPs role should be more than gate keeping
  minimising memory problems delays care planning
• Carers with traditional non-traditional
  ideologies need individual approach from services
  (e.g. support, supplementation, substitution)
• Carers appreciate detailed assessment,
  explanation, collaboration
• Continuity is essential Crossroads widely
  appreciated
• MORE INFORMATION NEEDED