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5 Steps to Living Well with
Dementia
in South Tipperary
Genio/HSE funded project
www.southtipperarydementia.ie
The process...
ConsortiumDr. Caitriona Crowe, Consultant in Old Age Psychiatry & Project Lead
Noel Maher, Clinical Nurse Specialist in Old Age Psychiatry & Deputy Lead
Chris Rush, Person with DementiaMarian Staunton, Person with DementiaMarie Ryan, Person with DementiaHelen Jenkins, CarerNan Hackett, CarerMary McGinn, CarerRichie Molloy, The Carers AssociationMartin Quinn, Muintir na TireJulie Whyte, Community and Voluntary ForumCaitriona Lavelle, The Alzheimers SocietyDr. Damian Sharpe, General PractitionerEsther Butler, Director of Public Health NursingAnn-Marie Slavin, Public Health NurseDr. Christina Donnellan, Consultant in Geriatric MedicineDr. Isweri Pillay, Consultant in Geriatric MedicineCatherine Sheehan, Clinical Nurse Specialist in Old Age PsychiatryElaine O Donnell, A/Clinical Nurse Specialist in Old Age PsychiatryAnne Quinn, Advanced Nurse Practitioner in DementiaSimone McGoldrick, Occupational TherapistCáit Mackey, Occupational TherapistBridget Farrell, HSE Manager Co-Ordinator of Elderly ServicesDi Murphy, HSE Home Help Co-OrdinatorEmma Moloney, Social Worker
We wanted to transform the life
experience of people with dementia
and their families in South Tipperary.
Aim
We consulted widely
– People with mild to moderate dementia
– Past carers of people with dementia who had died
– Carers of people with mild dementia
– Carers of people with moderate dementia
– Carers of people with severe dementia.
0
5
10
15
20
25
30
35
Happy to care Pressurised
into carer role
Benefits
outweighed
the sacrifices
Exhausting Advocacy
challenging
Feeling alone Worry about
end of life
How it feels to be a carer of someone with dementia in South
Tipperary.
We found that....
� The majority of our carers are spouses, living alone as a couple
(88%)
� Half are over the age of 65 years (52%).
� Most carers are caring for a single individual (89%) and half had
been carers for more than 3 years.
� 10% were caring for more than 10 years
� Most (88%) find the memory loss of dementia difficult to cope
with.
Carers said.....
• Most (74%) had considered a nursing home admission in
future, as the disease progresses.
• Half had either refused to take a loved one home from hospital
or considered an early nursing home admission because of fear
of managing their loved ones symptoms.
The Structure
• Step 1 Pre-Diagnosis
• Step 2 Early Dementia
• Step 3 Progressive Dementia
• Step 4 Advanced Dementia
• Step 5 Living well and Dying well
Dementia Support Worker Initiative
Goal focused
Special support
On verge of placement
Crisis support
One off day off
Respite
Hospital v home HospitalHome
Individualised supports
Person
Family
Needs
Crisis Response
Ellen’s story
Crisis minimization
Wandering
Incontinence
Night Wakening
Single point of contact
Flexible
Non-bureaucratic
Responsive
Clinical Nurse Specialist in Dementia
• Specialist dementia knowledge
• Clinical experience and expertise
• Explores and identifies needs
• Provides specialist interventions
What Services Carers felt were most useful to them
0 10 20 30 40 50 60 70
Home help
Genio home based respite
Day care centre
Alzheimers society day care
HSE respite
Home care packages
The carers association
More information
Genio crisis intervention
Le Cairde/ASI
Private home care
Senior alert scheme
Psych of old age
Help lines
Meals on wheels
Geriatrician
Active listening services
Muintir na Tire repair service
OT/Physio/SLT
Elder abuse service
Percentage
Cost effective
• 350 people supported in a bespoke manner = Cost of 3 people
in a Nursing home for 3 years
Quotes
• “the service was of great value to my mother and it was a life
saver for us her family”
• “ it was person-centred and always uplifting”
• “ helpful, friendly, made us feel like it wasn’t hopeless and gave
Mam something to look forward to every week”
• “ I look forward to the day I have the support”
‘Whatever you can do, or think you can, begin it.
Boldness has Genius, Power and Magic in it’.
Thank you.