In search of a hidden place:end of life and palliative care in

dementia and older age.

Dr Donald MacaskillCEO, Scottish Care

A hidden place ...

“I knew she was dying not so much because her pain had changed, or that her distress was different but because she looked at me from a place I hadn’t been to; her touch had changed; our togetherness even in her absence became more and more remote. I just knew. I felt it somewhere deep inside me where my words couldn’t speak.

In her last days we spent time just being with each other, reaching inside one another, and even though she was disappearing every day I think we found that hidden place of hope. ”

A hidden place …

A hidden place ...

• Changing attitudes and practice • Communication • Bereavement models • Pain and distress • Palliative partnerships.

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Changes

• Cultural alienation from death and dying• Medicalisation of end of life experience• Alienation from familiar place• Loss of community grieving• Fear of old age• Pathways replacing journeys.

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Research shows that ‘… the highest proportion of people with advanced dementia (are) living in a care home with a smaller number continuing to live at home.’

(Alzheimer Scotland: Advanced dementia practice model: understanding and transforming advanced dementia and end of life care.)

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Communication

‘… Ward et al (2008) found people with dementia living in care homes invested great effort in attempting to engage the people around them. Their study of interactions between care staff and residents found these were characterised by the conducting of tasks in a standardised manner, as opposed to engaging more socially with the person.

(Alzheimer Scotland: Advanced dementia practice model: understanding and transforming advanced dementia and end of life care.)

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Communication

‘Whilst the person may no longer be able to use words to communicate, other forms of expression will be found and this calls on the resourcefulness and creativity of those around the individual to tune into these messages…

An inclusive approach is required in considering and responding towhat may represent attempts at communication by the person. Physical movements, sounds and other embodied gestures can be seen as attempts at communication and expressions of selfhood in people with advanced dementia.’ (Alzheimer Scotland: Advanced dementia practice model: understanding and transforming advanced dementia and end of life care.)

A hidden place …

A hidden place …

“When you combine the fear of dying with a fear of sharing you end up being silent… when you have the courage to not know the answers then you start to understand...”

Bereavement and Grief

‘The spiritual, emotional, grief and bereavement aspects of advanced illness and end of life should be included.’ (Alzheimer Scotland: Advanced dementia practice model: understanding and transforming advanced dementia and end of life care.)

• Explore different bereavement models• Need waterfalls rather than pathways• Death education specifically its relationship to

anticipatory care and advanced planning• Holistic grieving.

A hidden place …

A hidden place …

“It’s like being soaked with different emotions every moment of the day… one minute I’m drowning and cant cope, then I’m on the shore coping, then I’m becalmed... It’s what lostness feels like event though he’s still here.”

Pain and distress

‘… pain is challenging because of the difficulties with communication and assessment ... A review of pain in dementia considered there to be a high risk of under-treatment of pain and a need for even greater attention to proactive assessment in the presence of cognitive impairment … People with advanced dementia can work around communication problems with the collaboration of others so their needs can be better understood. This relies upon the ability of those caring for the person to recognise and interpret the signs of distress such as facial expressions, movements, behaviours and vocalisations.(Alzheimer Scotland: Advanced dementia practice model: understanding and transforming advanced dementia and end of life care.)

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Who Cares?

‘It was considered important that those providing care should be recognised for their expertise in understanding the needs of the person. They should be enabled to continue to be involved in care as much as possible when the person is no longer at home, as they will pick up changes and recognise the expression of distress... The importance of bereavement support was also highlighted.’

(Alzheimer Scotland: Advanced dementia practice model: understanding and transforming advanced dementia and end of life care.)

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Palliative partnerships

The mutuality of shared skill, personal vulnerability and openness creates space for

person centred dying.

A hidden place …

A hidden place ...

“I knew she was dying not so much because her pain had changed, or that her distress was different but because she looked at me from a place I hadn’t been to; her touch had changed; our togetherness even in her absence became more and more remote. I just knew. I felt it somewhere deep inside me where my words couldn’t speak.

In her last days we spent time just being with each other, reaching inside one another, and even though she was disappearing every day I think we found that hidden place of hope. ”

A hidden place …

Thank you

Dr Donald MacaskillEmail: donald.macaskill@scottishcare.orgTwitter: @DrDMacaskill www.scottishcare.org

A hidden place …