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(DEOLD, unpublished data)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

j.vandersteen@vumc.nlor jtvandersteen@lumc.nl