Huntingtons Disease: The Carers Story

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Huntingtons Disease The Carers Story

• Andy Mantell

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Inspiration

• Social Worker on a specialist unit for people
  with huntingtons disease (pHD).
• Carers didnt have the opportunity to tell their
  story.
• Lack of early intervention by services?

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The Study

• Doctorate in Social Work and Social Policy at
  University of Sussex.
• Funded by
• Royal Hospital for Neuro-disability.
• Neuro-disability Research Trust Bursary.
• NHS Research and Development funding.

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Research Questions

• What are the common and significant experiences
  for relatives, in adapting to caring for a pHD?
• How are these experiences affected by support
  from others, including formal service provision?

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Research Aims

• 1) To explore and record the experiences of
  carers for pHD.
• (2) To identify any emerging patterns or
  careers (Taraborrelli 1996) for those looking
  after a pHD.
• (3) To identify the effects of the diseases
  progression on the career progression of
  carers.
• (4) To develop an understanding of the effects of
  (2) and (3) on the dialectic between the carer
  role and the other relationships existing between
  the two people.
• (5) To identify the implications of the carers
  own HD status on (2), (3) and (4). In particular
  the differences between carers at risk/not at
  risk carers who have been tested/not tested
  carers who have tested positive/negative carers
  who are symptomatic/not symptomatic.
• (6) To identify the effects of different packages
  of care on career progressions of carers.
• (7) Central to the purpose of this research is to
  identify the significance of the above findings
  for MDT practice. In particular, to enable MDT
  to tailor packages of care more effectively and
  in partnership with carers and users, in line
  with government guidance on Best Value (ISL.
  1997).

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How would the research be conducted?

• A Qualitative approach.
• Using grounded theory
• Single, semi-structured Interviews ranging from
  45 minutes to over 3 hours.
• Interviews were taped, transcribed and analysed
  using Atlas/ti software.

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Who took part?

• Thirty one adult (18 70) family members
  recruited via HDA.
• 10 males and 21 females.
• 18 spouses.
• 4 parents caring for their children.
• 7 adult children caring their parent.
• 2 siblings.
• 2 in-laws (care to mother-in-law and
  sisters-in-law).
• Five participants provided care to more than one
  relative.

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Findings The Impact of Symptoms

• Even when a history of HD was known symptoms were
  not immediately linked to HD by family or
  professionals.
• Caring gradually assumed, rather than a reasoned
  choice.
• Aggression, incontinence and severe cognitive
  difficulties the most difficult to manage,
  particularly in combination.
• And also, as I was saying to you before, about
  him coming and giving you a punch. Within two
  minutes, he didn't even know he'd done it
  (Clare).

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Findings The Practical Consequences

• Other obligations other family members, children
  and work.
• Finances, I mean that's taken us a few years
  to adjust to that, after working our lives, all
  our lives together, and all of a sudden that's
  what happened in one year. Nothing. It's a
  terrible strain (Richard).
• From daily activity to dangerous activity.
• Rest and relaxation.

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Findings Support from Family

• Secrecy. Those closest to the pHD tended to be
  the primary carer. Spouse, then parent, then
  adult child, then sibling. Women before men. Age
  significant in shift from parent to adult child.
• Secondary carers husbands acted in a
  complementary role to their spouse.
• Daughters acted in an auxiliary role to their
  mothers.

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Findings Support from Friends and Neighbours

• High risk of isolation.
• what is interesting too, is that the friends
  that I had at the time, gradually whittled away
  but I made new friends, who knew straightaway
  that he was ill so that was supportive, what is
  even better is my old friends (Tina).
• Reduce loneliness and provided practical support.
• Help to maintain perspective and validate actions.

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Findings Support from Services

• Lack of knowledge of HD, further hampered by not
  listening to carers.
• Gate keeping and labelling as carers.
• Slow to recognise potential problems even at
  crisis point.
• Choices of services often limited and/or
  inappropriate.
• Service provision further hampered by disputes in
  apportioning responsibility and gaining funding.

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Findings Impact on the Participants Health

• EmotionalI don't see an outlet. You feel like
  you are in a hopeless situation, basically
  because you want the best for her but you can't
  give it to her (Sarah).
• Physical She just lashed out and when I came to
  again, I was like What the hell's going on?
  Oh yeah, she can pack a fair punch, oh blimey,
  yeah (Tom).
• Mental health I was in a dreadful state, I was
  still going to work, and I just started having
  panic attacks and that at work, and crying
  (Tara).

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Findings Strategies - Normality

• Living day to day.
• I'd been a great believer, in fact, through
  Nigel's illness, I take one day at a time. I
  don't like, I can't think of the future, I don't
  like to think what the future may hold. I take
  one day at a time, I get up and just try and get
  through the day, if its been a good day, good,
  and if its been a bad day, then tomorrow might
  be better And that's how really I've coped with
  it (Tara).
• Reactive to events.

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Findings Strategies Proactive Care.

• I like to know exactly what is going on, I know
  the worst and then you can be prepared for it
  (Melissa).
• Planning for the future.
• Seek as much information as possible.
• More likely to seek help sooner.
• Clarity about what is wanted.

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Findings Strategies

• Routine.
• Control.
• Attitude I think what I got my strength from
  is everything boils downs to Huntington's disease
  and I say This thing isn't going to defeat
  me. You cannot let it sweep over you You
  must fight it, you've got to be strong in your
  mind. (Bob).
• Motivation We always said We've got a lot of
  living to do today and tomorrow. You don't
  change today or tomorrow. You only change over a
  period of time if you don't keep doing things.
  So we have tried to maintain that we can do
  things (Tracy).

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Findings Carer?

• Some participants did not view themselves as
  carers. They saw their care as just an
  expression of their relationship.
• Carer was descriptive of changed circumstances.
• Some defined themselves as carers and looked at
  their relationship as now a caring relationship.

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Analysis Dissonant Loss and Biographical
Disruption

• Participants faced many crisis and their
  resolution, whilst also facing multiple losses.
• Some are resolved within the way that we see the
  world.
• Others require a change in our assumptive world
  (Sque 2001).
• Where our life course changes as a result then a
  biographical disruption has occurred.

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Analysis (Spouses) From care-in-relationships to
caring relationships.

• Practical implications produced biographical
  disruption.
• Some long established relationships continued as
  care-in-relationships.
• As care exceeded customary expectations
  (Schofield et al.1998) in quantity or nature,
  then could be viewed as work. But still within
  context of relationship.
• Where a loss of mutuality (Nolan 2001) occurred
  then carer may redefine themselves as carers and
  their relationship as a caring relationship.

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Analysis The Policy Gap

• The National Service Framework for Long-term
  Conditions identifies 11 quality requirements for
  service provision (Department of Health 2005a).
• There is a considerable gap between participants
  experiences and these requirements.
• Assumptions by services of needs related to
  disease pathology.
• Continued emphasis on instrumental family care
  before services.

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Conclusions

• Caring for can be an expression of caring about,
  but love and labour are not necessarily the same.
• Expectations from others and self to care.
• Participants were concerned with sustaining their
  relationships. But services with instrumental
  care and professionalising carers.
• Services need to change emphasis to familys
  concerns, rather than gate keeping.
• Services need to be Proactive, receptive,
  responsive and sensitive.

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Bibliography

• Department of Health, 2005a. The National
  Service Framework for Long-term Conditions.
• Department of Health, 2005b. Independence,
  Well-being and Choice Our Vision for the Future
  of Social Care for Adults in England. London
  The Stationary Office.
• Nolan, M., 2001. The Positive Aspects of Caring.
  In S. Payne and C. Ellis-Hill (eds) Chronic and
  Terminal Illness New Perspectives on Caring and
  Carers. Oxford Oxford University Press.
• Schofield, H. (ed), 1998. Family Caregivers
  Disability, Illness and Ageing. Australia
  Allen and Unwin.
• Sque, M, 2001. Being a Carer in Acute Crisis
  The Situation for Relatives of Organ Donors. In
  S. Payne and C Ellis-Hill (eds) Chronic and
  Terminal Illness New Perspectives on Caring and
  Carers. Oxford Oxford University Press.
• Taraborrelli, P., 1993. Exemplar A Becoming A
  Carer.In N. Gilbert (ed) Researching Social
  Life. London Sage.
• The Cabinet Office, 2005. Improving the Life
  Chances for Disabled People. London The
  Stationary Office.