Importance of palliative role in dementia

Housing 21 has appointed a specialist palliative nurse to tackle the neglect of dementia patients' end-of-life needs. Vern Pitt finds she has personal reasons for making a success of her role

Housing 21 has appointed a specialist palliative nurse to tackle the neglect of dementia patients’ end-of-life needs. Vern Pitt finds she has personal reasons for making a success of her role

Gaining access to dementia services is difficult enough for paid care staff, let alone family carers.

That’s why care and supported housing provider Housing 21 appointed a specialist palliative care nurse for dementia patients at the end of 2008. “Our staff were coming across circumstances time and again where people weren’t getting the right help, particularly medical services,” says Rachael Dutton, research manager for Dementia Voice, Housing 21’s specialist dementia arm.

Funded by the King’s Fund, Housing 21 began a two-year pilot for its Dementia Voice nurse service in Westminster in December 2008, in partnership with the city council and NHS.

Morejoy Saineti was appointed to the role Dementia Voice nurse because of her qualifications in psychiatric care, general nursing and health research. She also cared for her mother, who had dementia, for several years, an experience that motivated her to take up the post. “I had a nasty experience looking after my mum, so I have a passion to see the service improve,” she says.

Based in the community, her key tasks include palliative nursing, co-ordinating a support system to help families cope with illness and bereavement, and transferring skills to paid and family carers.

She believes that her own caring experience gives her advantages when working with carers. “When you are in a uniform people look at you as somebody who doesn’t really know what they are going through,” she says. “If we can be in touch with our human aspect we can break through in terms of communication and understanding.” Saineti believes this is especially important in palliative care. Carers can feel guilty for moving relatives into a care home, but having experienced this herself she can relate to them and explain that, if they can no longer care, then it is best.

When talking to health and social care professionals, Saineti adds that being able to speak the profession’s language has been key in advocating for service users. She says she is often told that she is taken seriously when voicing carers’ concerns, when other professionals are not.

Communication is key because of the complications of dealing with dementia patients at the end of life. “Dementia is a bit different from other conditions which receive palliative care,” Saineti says. “When you employ good palliative care their condition improves and they can be in that state of the illness for some time, still with a good quality life, before they die.”

Problems arise because hospice care is often only available for a limited period while the intensive support required can be difficult to find. By building relationships with the local hospice and planning ahead – something social care staff do not have time to do – things can improve.

Dutton adds that health and social care staff are often unaware of the complications of how the disease develops. There is good understanding of the early symptoms, she says, but simple things are ignored later on, such as pain relief.

Despite increased pain in dementia patients being documented since the late 1990s, Saineti feels that frontline workers know little about how to assess this. “They confuse pain and agitation,” she says. “People think dementia is all psychological but of course a person can have arthritis as well.” This is an area where she feels her combination of skills is particularly effective.

Getting the service to the point it is now has not been easy. Saineti says: “I have learned that branding is important because when you ask the family if they want to be involved with an end-of-life nurse they don’t want to know; when you say palliative care they think of cancer.” Calling herself a Dementia Voice nurse allows her to explain what the service involves.

This has involved convincing colleagues to refer patients early to enable her to help them plan for the end of life.

The future of the project beyond the end of the pilot is unknown. Saineti is convinced similar positions should be set up in other areas. Referring to the most high-profile specialist nursing service, she says: “We need to be side by side with Macmillan Cancer nurses.”

Pilot results

Dementia Voice nurse pilot in Westminster -outcomes from first year:

  • 29 referrals from the local hospice, NHS and social services.
  • 20 assessments.
  • 75% of users died in preferred place of death where this was known.
  • 50 health and social care staff have received training from nurse.
  • An estimated 250 care home days have been saved from admissions being avoided.
  • An estimated 26 hospital bed days have been saved from earlier discharges.

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This article is published in the 15 April 2010 edition of Community Care magazine under the headline Palliative Role in Dementia 

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