'Dementia shouldn't be treated differently to any other disease, and patients deserve the same services'
Through the doors you can hear voices chorusing The Grand Old Duke of York. Moments later, I'm just wrapping up my interview with carer Rita Burke when one particular voice outside is raised in song, the wistful strains of Will Ye Go Lassie, Go, performed by her husband Paul.
She turns and listens. "That's my song," she says. "He always sings it for me."
As we go into the music session, Rita sits down beside her husband and lifts her voice in song, delivering an almost unbearably beautiful few moments of evocative melody that holds the room in thrall.
This is the first dementia-friendly hospice in the UK - the Northern Ireland Hospice building in north Belfast.
Dementia can be a heartbreaking illness, with carers having to watch the slow obliteration of a loved one's mind and personality - and it's often written off as an untreatable disease.
But NI Hospice wants to see palliative care put in place for anyone who has a terminal illness - and that includes dementia.
The hospice is at the heart of the groundbreaking International Conference on Palliative Dementia Care at the Europa Hotel today and tomorrow which brings together two core disciplines for the first time to advocate for a palliative care approach for people with dementia.
Joanne Ballentine is project lead for Northern Ireland Hospice's 'Hospice Enabled Dementia Partnerships' (HEDP), a three-year project to improve access for people with dementia to specialist palliative care.
She says that dementia is not quite an epidemic yet, but cases are on the rise worldwide.
"It's going to have a significant impact on health provision in the future. Across the world, the numbers of people being diagnosed with dementia is increasing and by 2026 there will be 27 million people with dementia in the world," she says.
And while dementia is on the increase because of an ageing population, dementia is not necessarily a disease of old age, Joanne says.
"Dementia is the term that is given to the signs and symptoms of a disease that affects the brain," she says.
"There is a new awareness that, instead of something that comes with age, dementia is a disease of the brain which can hit anybody at any time. The youngest diagnosis in the UK was at the age of eight," she says.
"Some of it is linked to lifestyle and health. Smoking, alcohol, having a poor diet, lack of exercise - factors like that can affect not all dementias, but some dementias."
When the project started, the hospice was in the process of developing a new building at Somerton Road, so the priority was to design it in a dementia-friendly way, with clear signage, muted colour schemes, non-reflective surfaces and silent buzzers in the inpatients' unit so that there are no loud noises to cause distress. "At the time of the project starting, the Northern Ireland Hospice noticed that it was not getting as many referrals for patients with dementia, and it asked why," Joanne says.
"At the same time, when we did get a referral, there was a concern among staff - are we able to support them appropriately for their needs?"
The pilot involves dementia wellbeing sessions attended by both patients and carers to provide a holistic approach that supports all aspects of care, including the wellbeing of family members.
Carers are also offered complementary therapy to boost wellbeing and stress relief, as well as peer support and guided counselling. It's also important that patients are able to set down their wishes about their future before they reach the stage where they lose cognition.
"We look at the issues - physical, spiritual and emotional - and we look to support them (patients and carers), from the point of diagnosis through until death, and after death we support the carers with bereavement support," Joanne says.
Patients are assessed to figure out if there is any underlying reason behind challenging behaviours, such as wakefulness at night or anxiety at particular times, and if there is a way to manage that. It could be something physical like pain, or constipation, or a sleep disorder.
"A nurse specialist assessment will be carried out using certain skills tailored to the needs of someone with dementia to work out what is happening and to work alongside their GP, to perhaps change medication or make adaptations to care provision to support them," Joanne says.
One valuable tool is the access to creative therapy sessions, including music, art and reminiscence, tailored to stimulating parts of the brain.
"On the cognitive side, music can be very powerful for someone with dementia," Joanne says.
"If you hear a song on the radio, straight away it takes you back to a time when it meant something to you - and it's the same with dementia. It will stimulate memory and get you thinking. It adds to your sense of wellbeing."
Joanne describes one patient who had been diagnosed with cancer as well as dementia and needed to have blood samples taken frequently.
"It always caused him a lot of trauma because he didn't understand why they wanted to take a lot of blood," she says.
"We asked the complementary therapist to give a complementary therapy to help him deal with stress and relax, and we liaised with the district nursing team so that they were coming straight after the complementary therapy session. Then he wasn't concerned about the bloods because it was after the session.
"When patients come here on a Friday, their families will say that after leaving here, their communication has improved, they are able to talk more to their loved ones and their sense of wellbeing and happiness has improved.
"And the carers have said they feel more able and ready to cope because we will give them information about dementia and that understanding and support will let them plan for the future so that they feel they have more control."
Joanne says she has wanted to be a nurse ever since having her tonsils out at the age of five. Now married to Andrew (52) and living in Whitehead with her father Jim (89), she has one daughter, Holly (26).
"There was one particular nurse - I can still remember her. She was lovely and I wanted to be like her at five years of age," she explains.
"But at that stage palliative care wasn't a thing. When I started my nursing career, it was theatre that I was interested in."
Joanne was based in Musgrave Park Hospital until the birth of her daughter in 1992 and later worked in the private nursing home sector.
But it was in 2001 that her dream job came up - a role as home staff nurse with the Northern Ireland Hospice.
"I liked the ethos. I liked what you give to someone, actually sitting and supporting them at a very vulnerable time in their life," she says.
"I loved it - I just thought I had come home. This is what I thought nursing would be."
Joanne says there's still a misconception that a hospice is a sad place where people come to die.
"But anybody that comes through the door, the first thing they take away is the energy they feel and the happiness, and they hear the laughter," she says.
At the moment the pilot scheme is only available in the Belfast Trust and NI Hospice are keen to expand it elsewhere. Not only is Joanne a palliative nurse specialist, but she's in a lecturer in palliative care for the Palliative Care Learning Academy, passing on her expertise to others.
"Northern Ireland Hospice is reaching out beyond cancer and the work that we are doing, and I hope we'll have a legacy effect in the wider health community, to support people with dementia so that they can live well until they die," she says.
"One of the reasons why this conference is so important is that delegates are coming from all over the world. By sharing our story and sharing our message of palliative support we are letting them take a piece back to where they work.
"Things need to change and thankfully they are changing - they're now recommending that dementia isn't just something that happens as we age.
"It's a disease and why should it be treated any differently from any other disease - why shouldn't they receive the same services?"
'Paul was a very keen hill walker and it's losing things bit by bit that changes life'
Rita Burke (63), from north Belfast, is married to Paul (64), a retired essential skills tutor in Belfast Met who has developed dementia. They have a daughter Naomh (37) and son Ciaran (33). Rita says:
Paul retired when he was about 57, through ill-health. He has had a very complex health portfolio.
The dementia became very obvious, particularly from last summer, but looking back and piecing things together, I am seeing the decline in his wellbeing from when he had his triple bypass in 2012.
There were very classic signs of repeating things - asking the same questions over and over again.
When I began to get worried I'd check with our local butcher Stanley who we knew well. He'd ring up and tell me Paul had been coming in and wanting to buy the same meat again and again.
He'd ask for a pound of mince and Stanley would tell him 'it's in your bag'.
Having that kind of kindness is very, very valuable and it was very, very reassuring.
We've been round all the services. Meadowlands has great provision, because he can see the occupational therapist and the doctor all in one session.
Paul would have been a very keen hill walker in the Mournes. It's the bit-by-bit losing things that you enjoy and you become very sedentary. Your life takes a different phase.
Paul goes to the day centre three times a week. He enjoys having somewhere to get up and go to - that's the big bonus, having a focus.
He enjoys creative writing - some of his pieces are autobiographical and he writes about his experiences.
He did a session here as a service user on old coins, and the amount of discussion and reminiscence that that brought was amazing.
Ciaran brought Paul to the May Day March as he was always an active trade unionist. Things like that really perk him up.
He's been to Russia and Cuba and he can tell you chapter and verse on American foreign policy and what he hates about it - that would be his thing.
Living with a husband who has dementia becomes isolating. I care for Paul and it changes the dynamic of a relationship when your husband needs a carer. That does take an adjustment.
Because carers have access to the therapist, you do have a balance of relaxation. You meet other carers who are at different stages in terms of caring for parents or husband. You do build up a rapport with people."
Conference brings international experts together
Northern Ireland Hospice is a leading provider of specialist palliative care.
Established in 1983, the organisation now cares for over 4,000 infants, children and adults annually.
In 2016, NI Hospice took a leading role in developing a Hospice Enabled Dementia Partnership, bringing together professionals and individuals with dementia to improve access to specialist palliative care for people with dementia.
Through the creation and hosting of the inaugural International Conference on Palliative Dementia Care, the hospice aims to bring together international experts in the fields of dementia and palliative care to exchange, develop and interrogate findings on how this combined expertise might successfully be brought into closer alignment for the benefit of people and practitioners around the world.
The conference is being held today and tomorrow at the Europa Hotel in Belfast, hosted by the NI Hospice Palliative Care Learning Academy.
- For further details go to www.icpdc.org.