Transcript Who is Taking Care?: Accessing Primary Health Care and

Preliminary findings of the
Trandisciplinary Primary Care for Caregivers of Individuals with
Alzheimer Disease Study
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Alzheimer Society of Canada
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Canadian Nurses Foundation
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Principal Investigator: Dr. Deborah Kiceniuk
(Dalhousie/MSVU)
Co-Investigators:
Dr. Nandini Natarajan (Dalhousie, CDHA),
Dr. Lynne Robinson (Dalhousie),
Ms. Joni Hockert (CDHA)
Research Coordinator: Ms. Shannon
McEvenue (MSVU)
Research Student Trainee: Ms. Kathryn
Francis (Dalhousie)
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Providing care to individuals with AD is a
costly and urgent health care issue
Providing care comes with significant and
complex challenges for caregivers
Caregivers require appropriate care and
support to continue in their essential roles
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How are primary health professionals
providing care and support to
caregivers of individuals with AD and
dementia?
What are the barriers to providing this
support?
What would a model of primary health
care for caregivers of individuals with
AD/dementia look like?
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In depth one-on-one interviews with family
caregivers, health care providers, community
organizations, and government
representatives
Care providers included physicians, nurses,
social workers, pharmacists, occupational
therapists, psychologists, and day program
coordinators
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Caregivers
Physicians
Nurses
Pharmacists
Other Providers
Community Organizations
Government
Representatives
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This presentation will focus on data collected
from the caregivers interviewed
Focusing on their experiences
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Seven female, two males
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Living arrangements - varied
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Relationship to care receiver - five CG caring
for a parent, four CG spouses
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Seven with professional experience in the
health care system
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Caregiver stress and sacrifice was evident
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Caregivers discussed a wide range of daily
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Self-recognition of needs and boundaries varied
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Caregiving role included advocacy and self-care
challenges
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Caregivers discussed service utilization with
respect to their care receivers
Participants had some difficulty verbalizing
health care and support as it related to their
caregiving role
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Family Physician
Own health care needs:
“we have a walk-in clinic”
“And sometimes the doctor herself calls”
Some had not seen a physician for nearly 2
years
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Specialists
Available to most caregivers
Access was limited
Wait times – 2-3 months
Some did not see the need or value:
“I don’t think we would have done anything
differently if we had a piece of paper saying AD”
Support:
“it is not in their protocol to be supportive”
“we need leadership out there”
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Pharmacist Services
Most CG accessed pharmacist’s advice:
“tell me what [drug] is all about?”
“was the one who helped me …figure out how
to access pharmacare”
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Respite Care
- Few CG used this service
- CG are very appreciated of the break
- Variety of sources from private to public
home care or family members
- 0-10+ hours of respite
- Issue of appropriate care/scheduling
“it must be difficult if that’s your only
choice to see your spouse in that kind of
setting”
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Home Care
Most of the CG’s were not accessing public home
care services for a variety of reasons
- Not at the stage where they qualified
- Had assistant employed
- Expressed need for social interaction for CR
“17 folk in and out over two-week period…Like we
really had ourselves set up for defeat”
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Long-Term Care
- 2/3’s of the CG lived with their CR
- Those CG whose CR was in LTC - still spent a
significant time with the CR after placement
- The need to plan for long term care or end
up in transition waiting
- Significant wait lists
“they are absolutely wonderful over
there, the nurses”
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Day Programs
- Few CG used this for respite and social interaction for the
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CR
Reason for not using it:
Lack of availability
Inappropriateness of level of care
Inflexible hours
CR resistance
“they offer crafts. Well, he wouldn’t do crafts”
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Support Groups
- Some were active participants
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Found them through word-of-mouth
Used it for:
- social support as opposed to emotional support
- information gathering/problem-solving
Others found it emotionally draining
EAP
“I do on-line counseling, ‘cause I know every
counselor in town”
Alzheimer Society Services, Support, and
Referrals
Alzheimer Society and Caregivers NS
are underutilized resources
Emotional/Psychological Care
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This care was lacking for the CG in this study
Received it from family and friends, if at all
“I haven’t got an hour to sit with this person.
And being a ‘doer’ I always opted to getting
the ‘to do’ list shortened rather than taking
care of my emotional self.”
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Physician Time and Availability
All had access to FP
- focus on health-related needs not CG needs
- other health professionals to take on support
roles (dementia education and referral
services)
- except for one CG no one was asked…
“How are you coping?”
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Availability of Appropriate Services
very task-oriented such as meal preparation or
personal care
only available during the day and CG would like
to go out for an evening
depended on the stage of the illness not on
need of CG (respite bed at early stages)
location - rural/small town/dual role
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After 3 intake workers
Intake Worker: “We could come in and tie his
shoe laces”
CG replies: “I want someone who would just
chat to him...so he can laugh and reminisce
..he may not even understand what he is
talking about but just listen”
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Fragmentation of Services
tracking down services and explaining
needs
“Care Plan Puzzle”
“all these pieces scattered on a board and
nothings connected”
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Care Provider Skills and Training
◦ Level of skills, knowledge, and training in dementia care were
lacking
◦ Less than optimal care experience
“Good enough assessment to see the big picture”
And “I am not sure that our care providers are
trained in a broad enough way to do that”
“they would set Mom up with a jigsaw puzzle…500
piece puzzle…and then wonder why …she would
get frustrated”
Appropriate Language: The Next Adventure:
“When we came back [to the doctor] after the diagnosis”
FP: “you’re going to …you’ll need babysitters”
CG: “jeez..that’s funny, why would we need
babysitters? No baby in our house.”
FP: “I guess you’re telling me off”
“He was a great support”
Appropriate Dress:
CG: “we had one [care provider] that wore lowcut tank tops and short shorts
“bottom-line is that person is in a bathroom
situation with a male who could think that it
was his wife 30 years ago”
“and then you have drama”
CG spend a lot of time to find information
about AD, and services for them and their CR
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single repository but with a referral
service
assist in planning for the
progression of the disease
“sometimes you don’t know
what you don’t know”
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Transportation/ Location
Most of the CG - not a problem
It would be a significant problem for
others
More so in rural areas
Time off work
4 hour drive to get parent
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Wait-times for services
◦ Some did not perceive wait times as long but others
“my mother’s dementia was getting worse…
something’s going to break here,
my health or my sanity”
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Personal Finances
some public services had a cost
associated with them
If CR’s condition was not advanced
had to wait for services or pay
“ a lot of families cannot afford to have nursing
care around the clock…
“so they [CR] end up in hospitals”
“Yeah, I find it a little expensive”
“You know it would be nice have a tax break”
Recommendations
1. Care Planning – CG want a plan similar to
those strategies for cancer and diabetes
2. Improved Links Between FP and Appropriate
Resources
FP give referrals for ID geriatric care but are not
always part of that care
FP need access to hospital charts
Improved links between FP and available
resources (AS and Caregivers Groups)
Recommendations
3. Make Home Care Less Task-Oriented
CG’s in this study felt that the CR could
use social stimulation
4. Training for Health Care Providers at all
Levels regarding Dementia Care and CG’s
Needs
Models of Primary Care
Collaborative Caregiver –Related
Services in NS
Adult Day Clinic – Eastern Shore Memorial Hospital
schedule visits for OT, PT, FP, SW, Pharmacy, nursing, blood
work (Daily Fee $15.00 includes lunch and trans.)
www.Caregivers.org/adult_day_programs.php
Centre for Health Care for the Elderly – QEII
Geriatric Day Hospital, Geriatric Ambulatory Care, and Falls
Clinic
Collaborative Caregiver –Related
Services in NS
Seniors Mental Health – community outreach at Abbey Lane
and NSH
Interdisciplinary Team – psychiatry, geriatrics, FM,
nursing, SW, OT, PT, and recreation therapy
Home Visits
Serves HRM and Halifax County
Geriatric Consultation Service- Sutherland Harris Memorial
Hospital , Pictou
Community-based
Assessment and follow-up to CR and CG
By physician referral only
Collaborative Caregiver –Related
Services in NS
Seniors Mental Health – Annapolis Valley
Nursing and Psychiatric Assessment with some follow-up
FP are encourage to participate
Senior mental health nurse provides CG support and
education as well as referrals to resources
Seniors Health Team – South Shore
In-home assessments and follow-up
Nurse, pharmacist, OT, PT, and SW
Cape Breton Geriatric Medicine
Geriatrician, nurse, and SW
In-home assessments and some follow-up
Stay Tuned! …..
as we will be back with the next set of
results from the health provider groups
Goodbye for now!