Hospice providing a new and vital service to help dementia sufferers

HospiceCare North Northumberland's dementia team.
HospiceCare North Northumberland's dementia team.

Hospice Care Week is an annual week of activity to raise the profile of hospice care across the UK. This year, it starts tomorrow and runs until Sunday, October 15.

As part of this, the Gazette is highlighting the important work that HospiceCare North Northumberland does in the community, focusing on a new scheme to support those with dementia.

By 2021, the number of people living with dementia will rise to more than a million, with many likely to die in a care home.

This is supported by an Alzheimer’s Society report, suggesting that 80 per cent of people living in care homes have dementia.

Armed with this information and having some understanding of the challenges faced by carers and families when caring for someone with dementia at the end of their life, HospiceCare North Northumberland has set about developing a project to be delivered to staff in care homes across north Northumberland.

The aim of this initiative is not only to support and raise awareness of the care-home staff, but to help make a difference in the quality of care, delivery and support to people with dementia and their families at the end of their life.

In 2016, the project was successfully funded by two charitable Trusts – Henfrey Charitable Trust and the Garfield Weston Foundation. Their generosity meant that the project was extended from 18 months to two years.

Once funding was in place, the hospice employed two mental-health nurses into its team for two days a week so that the knowledge and experience of dementia and end-of-life care could be fused together.

Twenty care homes across north Northumberland will be approached over the next two years to engage with the hospice, with an opportunity to develop partnership working as well as participate in the project.

Earlier this year, five care homes were contacted and currently four venues across Alnwick, Amble and Berwick are participating in the project’s seven-session programme which addresses topics such as dementia, end-of-life, communication, comfort care, families, last days of life and bereavement.

The hospice is four months into delivering the programme and the care homes are welcoming and showing a commitment to the programme by most of their care staff attending each of the sessions which are well received with feedback varying from good to excellent.

So while the project is still in its infancy, its reception from care homes and the relationships which are developing with the hospice is positive and already making a difference in some way.

Once the programme has finished, relationships with the care home will continue with the hospice, as each venue will have identified one or two Hospice Link Carers to continue developing relationships with on-going access to support and information when caring for someone with dementia and their family at end of life.

Alison Moore is the care manager at Heatherdale Care Home, at Hadston. She welcomed the opportunity to have the hospice deliver dementia and end-of-life-care training to her staff when approached by HospiceCare earlier this year.

She said: “We have all benefited by having HospiceCare in to talk about death and dying.

“It has enabled us to have a different approach with our families and to have a more open conversation about end-of-life care.

“We have found it a positive and rewarding experience having this additional training.

“It is also very comforting to know that HospiceCare will still be supporting us around dementia and end-of-life care now and in the future. I do hope that the other care homes in north Northumberland take up this wonderful opportunity from HospiceCare.”

‘The conversations were hard but they united us in making sure dad had the best care possible’

Sue Gilbertson, HospiceCare’s clinical manager, has shared a personal story about her father’s Alzheimer’s diagnosis.

She said: “As a family, we had lived with dad’s diagnosis of Alzheimer’s for 15 years.

“Two years ago, my family met a GP to discuss dad’s future care.

“We knew that he would never wish to be in hospital, so we wanted to make sure he was treated appropriately in a place of comfort and familiarity.

“An Emergency Health Plan and Do Not Attempt Cardiac Resuscitation were put in place, stating that dad was for ‘comfort care’ at home.

“Having these discussions as a family was sad and not always easy, but what the conversations did were unite us in making sure dad had the best care possible to allow him to die ‘a good death’ with dignity, which is what happened.

“On May 22, dad, aged 84, died peacefully at home with us all there, including my dog, whose name, incidentally, dad never forgot!

“Being a hospice nurse meant that it was an absolute privilege that I could do this last thing for my dad, with the added support of some overnight care from HospiceCare’s Hospice at Home team.”

A vital charity dedicated to providing care and support to those affected by life-limiting illnesses

HospiceCare North Northumberland is dedicated to providing care and support to adults, carers and families, whose lives are affected by cancer and other life-limiting illnesses such as respiratory and heart disease, motor-neurone disease and multiple sclerosis.

Its mission is to ensure that the communities that it serves has free, flexible and ongoing access to the best possible palliative care.

This is delivered at whatever stage of an individual’s illness and at a time and place of their choosing.

Founded in 1995, HospiceCare is an independent charity and the most northerly hospice in England, with day-therapy centres in Alnwick and Berwick.

The charity provides care and support for around 360 families each year.

Its Hospice at Home service helps provide short-term respite for patients and their families together, with expert end-of-life care at home.

HospiceCare’s Bereavement Support Service is available to all – even those who have had no previous contact with the hospice.

The hospice receives less than 10 per cent of its funding from the NHS; the rest is collected from donations and fund-raising.

All our services are free of charge and patients don’t need a GP referral.

Last year, HospiceCare:

○ Delivered more than 7,500 hours of Hospice at Home nursing care and support;

○ Had 110 new referrals for the Hospice at Home services;

○ Delivered nearly 4,000 hours of carer respite;

○ Delivered 385 hours of bereavement support and received 53 new referrals;

○ Its award-winning volunteers saved the charity more than £108,000 in the hours they donated to the hospice.

For more information and to donate to the cause, visit www.hospicecare-nn.org.uk or call 01665 606515.