a little about me… caregiver health: from research …...time out for caregivers workshop (psbc)...

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K A I T L Y N P . R O L A N D , M S C P H D C A N D I D A T E H E A L T H & E X E R C I S E S C I E N C E , U B C O K A N A G A N

r o l a n d k a @ i n t e r c h a n g e . u b c . c a

M A Y 2 6 T H 2 0 1 1

Time out for Caregivers Workshop (PSBC)

Caregiver Health: from research to real-life

A little about me…


Sept ’87

Why Parkinson’s disease?


  Grampy   Nanny   London on   Kelowna

Outline


  Parkinson’s disease   What is a caregiver?   Topics

  Health and wellbeing   Relationships   Mental vs. Physical   Cognitive changes   Care requirement changes   Age of caregiver – does it make a difference?   End of life experiences

• Motor, cognitive, autonomic • Causes: • Environmental • Ageing • Familial (genetic)

•  Nigral cell loss (SNpc) and • Neurotransmitter deficits

2003

1964

What is Parkinson’s disease?


  Braak staging (from brain stem to cortex)

Preclinical?

Cell death associated with PD makes it abnormally pale

Pathology


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What is a “caregiver”?


  Defined most broadly, a caregiver is anyone who is involved in providing assistance or treatment to improve the life of an ill person. Doctors, psychiatrists, nurses, spouses, other family members, and friends can all be considered caregivers. For the purposes of this section, a caregiver is defined as the person who has primary responsibility for the general well-being of a PWP, or who is otherwise intimately involved with care issues. PD is a disease that progresses slowly. A PWP's symptoms may not substantially limit his or her physical abilities for many years. During that time, the necessary care may consist primarily of understanding and emotional support. Later, as the disease does progress, a caregiver takes on more responsibility for physical tasks the PWP can no longer manage.


Health vs. Strain


  CG health=balance of negative & positive variables   Negatives predict strain   Positives provide a buffer

  For example, important positive buffers   Preparedness   Good relationship quality   Draw meaning from care experiences

Well-being


  “contented existence”   health status of the PWP linked to CG wellbeing

  Physical mobility (falls)   Social interactions

  including depression   Cognitive changes

Peters et al. 2011

Relationships


  Changes within relationship   Feelings of loss, disappointment, sadness

  Tension within relationship   Personality changes   Care decision conflicts

  Social Isolation   Unpredictability of PD limit activities   Socialize as a couple   grandchildren

Mental vs. Physical


  Physical vs. Mental “I would shovel 100 driveways if I had to. It is a physical burden, but I’m more stressed about making big decisions on my own that we used to do together, like, whether or no to see the house. That is what is hard!”

  Safety “ when walking up the stairs he puts just the tips of his toes and think that he’s safe. It is the scariest thing and I worry about his safety because he needs reminding about common things like that”

Roland et al. 2010

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  PDD   6-fold increase in prevalence   confused, unable to be left alone, agitated, delusional, moody,

**dys-executive function

  PDD Caregivers   Neuropsychiatric symptoms   Medication

Cognitive Changes


Naismith et al. 2010

Care Requirements


  Caregiver Identity   Themes:

  “Anticipating the inevitable”   “Reaching a limit”

McLennon et al., 2010

Does Age Matter?


  ~15% of PWP diagnosed under the age of 50

YES! Young-onset CG tend to have…   Lack of personal resources (energy, time)   Lower mutuality   Lower rewards of meaning

Carter et al., 2010

50 27 77

Care for yourself


  Don’t suffer   Sustain yourself   Be honest   Find a “cheer squad”   Celebrate the small stuff   Set boundaries

Living and Coping


  Take an active role   Talk, without judgment   Don’t give up   De-stress   Don’t overdo it   Journal the Joys   Disease does not define you

Some Additional Resources…


  Staying afloat in a sea of forgetfulness   Gary Joseph LeBlanc

  http://www.michaeljfox.org/living_patientsAndCaregivers_guideForCaregivers.cfm

a little about me… caregiver health: from research …...time out for caregivers workshop (psbc)...

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