the namaste care family program - landskonferansen i...
TRANSCRIPT
The Namaste Care Family program
for people with advanced dementia and their families
Jenny T. van der Steen, PhDTeam: Hanneke Smaling, MSc; Karlijn Joling, PhD; Prof Anneke Francke, PhD; Prof Ladislav Volicer,
MD, PhD; Prof Joyce Simard
VU University Medical Center EMGO Institute for Health and Care ResearchDepartment of Public and Occupational HealthAmsterdam, The Netherlandsand Leiden University Medical CenterLeiden, the Netherlandsand Radboud university medical centerNijmegen, the Netherlands
Dementia and palliative care
EAPC white paper to define palliative care in dementia
The two most important domains (out of 11):1. Optimal treatment of symptoms and providing comfort2. Person‐centred care, communication and shared decision making
(van der Steen, Radbruch, et al.; EAPC, Palliat Med 2014)
Care at the end of life In Dutch nursing home residents with dementia
High symptom burdenDecrease in use of non‐pharmacological interventionstowards the end of life
Any experience of dissatisfaction with care last months: 28%
Main theme: neglect, not paying attention, no effort‐practically (agreements about out of bed violated, wrong clothes)‐emotionally (not being touched, attending to visitors not to the dying person)
(DEOLD, unpublished data)
(Hendriks et al., JPSM 2014; JAMDA 2015)
Palliative care and advanced dementia
(van der Steen, Radbruch, et al.; EAPC, Palliat Med 2014)
Quality of lifë:
Most compatible with goals of ‐maintenance of functionand ‐maximization of comfort
Advanced dementia
People may be unable to: verbalize discomfortexpress needs in an effective wayinitiate meaningful activitiesconnect with othersbenefit from traditional group activities
Families may not know “what to do”
Advanced dementia
Yet, people have needs (and rights):
to have (physical) problems addressedto be treated with dignity, respect, kindnessto engage with others, to socialize, relate
special approach needed
Systematic review (Perrar et al., JAD 2014)
‐physical ‐social‐psychological ‐spiritualand‐supportive ‐environmental needs‐needs relatedto individuality
Namaste Care https://vimeo.com/161172613
for nursing home residents with advanced dementia
to improve quality of life and comfortincorporates person‐centered and palliative care approaches continues at the end of life
Namaste Carefor nursing home residents with advanced dementia
presence of othersloving touch and meaningful activitiescalming environment no extra staff: Namaste worker, other staff helps, volunteers
Namaste Carefor nursing home residents with advanced dementia
9.30am – 11.30amperson-centered welcomeassessed for comfort & painactivities (grooming, massage, etc.)bring the outside insidelight up, happy musicthanked for joining Namaste Care
1pm – 3pmperson-centered welcome assessed for comfort & painrange of motion dancingfoot soakswatch nature filmthanked for joining Namaste Care
**Drinks and snacks are offered throughout**
Namaste Care
Comfortable environment – non‐institutional, “homely” “spa”
blankets, reclining chairs, scents, music, low voices..
15 attributes of environmental design (Fleming et al., 2015) Support use of sensesAccess to outdoor/natureEngagement spiritualitySocial engagementFamiliarity and homelinessBe with familyPromote calmnessReduce physical distressProvide privacySafety and securityFind your wayStaff monitoring via contactFacilitate nursing care
Namaste Care
Comfortable environment – non‐institutional, “homely” “spa”
blankets, reclining chairs, scents, music, low voices..
15 attributes of environmental design (Fleming et al., 2015) Support use of sensesAccess to outdoor/natureEngagement spiritualitySocial engagementFamiliarity and homelinessBe with familyPromote calmnessReduce physical distressProvide privacySafety and securityFind your wayStaff monitoring via contactFacilitate nursing care
Psychological needs (Kitwood):
Comfort
Identity
Attachment
Engagement
Social inclusion
Namaste Care: evidence
Successfully changed lives in US, UK, and Australian nursing homes (Stacpoole et al.; Chang et al.; Reid et al.)improved behaviourreduced psychotropic / anti‐anxiety medication
Thank youOh… it feels so good!
Namaste Care in the Netherlands
snoezelen
Flemish families resisted active involvement (De Smedt, 2005)
Namaste Care in the Netherlands
snoezelen
modify to fit it into the Dutch health care landscapeNamaste Care Family program will:‐ emphasize family involvement‐ end‐of‐life care
Cluster‐randomized controlled trial (registered: NTR5692)
Data collection fall 2016 – 2018
16 nursing homes, 192 residents; pilot at home
Primary outcomes‐ patients’ quality of life (Quality of Life in Late‐Stage Dementia)
‐ families’ positive caregiving experiences (PES and GAIN) fewer in dementia, even at the end of life
(SCP data, the Netherlands Institute for Social Research)
Cost effectiveness
Namaste Care Family research
Cluster‐randomized controlled trial (registered: NTR5692)
Data collection fall 2016 – 2018
16 nursing homes, 192 residents; pilot at home
Primary outcomes‐ patients’ quality of life (Quality of Life in Late‐Stage Dementia)
‐ families’ positive caregiving experiences (PES and GAIN) fewer in dementia, even at the end of life
(SCP data, the Netherlands Institute for Social Research)
Cost effectiveness
Namaste Care Family research
Namaste Care Family research
Inclusion criteria
cannot participate in regular activities
enjoys being touched
few visitors
nurse expects patient to benefit from Namastenurse expects family to benefit from Namaste
Namaste Care Family research
Namaste Care Family intervention (versus control)
More person‐centered care
More rewarding family visits
Improved quality of life
Namaste Care Family research
More touch interventions implemented (versus control)
Higher number of family visits
More rewarding family visits
More positive caregiving experiences
Increased engagement
In patients with apathy only? (moderator)
Namaste Care Family implementation
Develop a toolkit with instructional materialsSustainability: train “champion” families and volunteers to become trainers themselvesIn touch with Namaste projects around the world (Canada, UK)
Namaste Care Family pros
Program to really see the person, to make it happenPsychosocial intervention that does not stop at the end of lifePositive experiences with caregiving for familyIntegrates palliative care approach in dementia care