'Angela has a rare form of dementia and can't speak... but music triggers something in her brain and it's amazing to hear her singing again'
Retired teacher Angela Smyth, a talented singer and musician, is no longer able to speak due to the effects of the illness. Ahead of Palliative Care Week, her husband Pat tells Stephanie Bell about the exceptional support the couple has received at the NI Hospice
Pat Smyth marvels at the fact that his wife Angela can still sing as beautifully as she ever did, even though dementia has robbed her of the ability to speak.
It was singing that first brought the Belfast couple together as members of the St Agnes's Choral Society over 40 years ago.
Angela (70), a retired PE teacher at Holy Rosary Primary in Belfast, started to experience symptoms of dementia 10 years ago and was officially diagnosed in 2012.
Pat, who is also 70, is a retired theatre nurse who worked in the Royal Victoria Hospital and has cared for his wife at home.
As Angela's condition has worsened, it is increasingly difficult for Pat to watch his wife succumb to the worst effects of the disease and he has found a lifeline in a support service for carers at the Northern Ireland Hospice.
As the hospice prepares to mark Palliative Care Week from September 8-14, Pat shares details of his experiences as a carer.
He is also to feature in a short film as part of an all-Ireland campaign on palliative care to mark the week and encourage others to take part.
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Pat and Angela have three children, David (36) and twins Patrick and Helen, who are 34. Patrick has inherited his parents' love and talent for singing.
He is a professional singer based in London who has performed on Strictly Come Dancing, numerous West End shows and recently at the BBC Proms.
Pat and Angela have been lifelong members of their local choral society and singing continues to be one of the few pleasures that Angela can still enjoy, as Pat explains: "We met through singing. Our 40th wedding anniversary is this year and we met 42 years ago at a concert organised by St Agnes's Choral Society which I have been a member of for 52 years.
"Angela was a very outgoing and very talented person and she would have organised all of her school's shows.
"She loves acting and performing.
"Sadly she is the exact opposite of that now. It's now the complete reverse as that part of her brain is dying off. Both sides and the back of her brain are now affected and her memory has gone as well as her speech.
"Her vision and perception are also a bit ropey now, especially when it comes to using stairs.
"The Alzheimer's Society holds a 'singing for the brain' event every week for patients and carers which we just love going to.
"It is led by Adele McMahon who plays guitar and sings and the words of the songs are put up on the wall. There is a volunteer who plays piano and others help out.
"It's one hour of singing a week for patients and carers and it's a great cross-community event. It's amazing because the music triggers something in the brain and people like Angela who can't speak are able to sing.
"In that hour you can see the patients relax and become more animated."
Angela has a rare form of the disease known as posterior cortical atrophy (PCA) which also famously affected the author, the late Terry Pratchett.
In 2008, Sir Terry triggered a societal shift in attitudes towards dementia when, on stage at the Alzheimer's Research UK's annual research conference, he delivered a uniquely witty and affecting announcement of his own dementia diagnosis.
PCA refers to gradual and progressive degeneration of the outer layer of the brain in the part of the brain located in the back of the head.
The most common symptoms include damage to the area responsible for processing visual information as well as slowly developing difficulties with visual tasks such as reading and judging distances.
Tragically, Angela is now in the later stages of the disease and her condition has deteriorated rapidly in the last few months. Pat has found great support in attending the NI Hospice Hub and encourages any carers to seek support from others.
He says: "Angela has got notably worse in the last three months and her confusion in particular is much more frequent and severe. It has been extremely difficult and it is an awful long journey, and patients need a lot of help.
"I would advise people to take all the help that is going.
"A lot of people think the hospice equals cancer equals death, but they do a lot of other things as well.
"I was attending a group for carers. It was great. It provides a lot of practical support with information on what is out there in terms of befriending services and respite and even dealing with things like power of attorney which you have to consider.
"There were eight sessions in total and we all got a cup of tea and had a bit of a chat. I found it priceless, especially being able to talk to other people going through the same thing. The old adage that there is always someone else worse off is quite true.
"People were at different stages of the journey and we gave support to each other and sometimes we would have a good old cry and just found empathy and sympathy in that room.
"I couldn't praise it enough.
"I was happy to help make the video for Palliative Care Week as I believe awareness of Alzheimer's is really needed.
"It is set to be the number one killer and even exceed cancer in a few years - it is a social and economic time bomb that needs to be dealt with now.
"People also need to know it is not an infectious disease.
"It can strike anyone and it doesn't discriminate between class or creed."
Ahead of this year's Palliative Care Week, organisers are calling on individuals and groups to get involved.
The week aims to raise awareness of the difference palliative care can make to people with a life-limiting illness or condition, to carers and to families throughout Northern Ireland and the Republic.
The event is coordinated by All Ireland Institute of Hospice and Palliative Care (AIIHPC). This year's theme is 'Palliative Care: Surrounding You with Support', focusing on how people with palliative care needs are being supported and helped in the community.
This can involve support from primary care (such as GPs, public health nurses, district nurses), from hospices, hospitals, nursing homes, and wider community supports beyond formal health and social care services.
AIIHPC is encouraging individuals and communities to get involved.
Karen Charnley, AIIHPC director, says: "Palliative care ensures that a person with a serious and progressive illness, regardless of age or condition, can have the best possible quality of life.
"Palliative care puts the person at the centre of care with a range of supports around them, whether that is their family or friends, including carers, or health professionals such as GPs, nurses or wider community supports.
"This year, we're calling on everyone to help us to raise awareness of the importance of palliative care.
"If you are interested in learning more about palliative care and the campaign, or are involved in a community organisation interested in health and well-being, we would love to hear from you.
"Individuals and groups can get involved through holding a small event, or by distributing promotional leaflets which AIIHPC would be happy to supply, or by posting their own palliative care experience story on social media during Palliative Care Week using the #pallcareweek hashtag."
For information on Palliative Care Week visit www.aiihpc.org. Groups or individuals wishing to get involved by planning an event, and to obtain leaflets and/or posters, can contact AIIHPC on 00353 4912948 or by emailing firstname.lastname@example.org