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| Early-onset dementia: I'm still the person I was after diagnosis at 49 | |
| (14 days later) | |
| Peter Alexander was diagnosed with dementia at the age of 49 | Peter Alexander was diagnosed with dementia at the age of 49 |
| Dementia was not something Peter Alexander expected to be diagnosed with in his late 40s. | Dementia was not something Peter Alexander expected to be diagnosed with in his late 40s. |
| It meant leaving his job and adapting to a new way of life. | It meant leaving his job and adapting to a new way of life. |
| Now, aged 56, Peter is passionate about addressing the stigma around a condition often associated with elderly people. | Now, aged 56, Peter is passionate about addressing the stigma around a condition often associated with elderly people. |
| "I might not always be able to express it in the same way, but I'm still the same person I was, inside I'm still Peter," he told BBC News NI. | "I might not always be able to express it in the same way, but I'm still the same person I was, inside I'm still Peter," he told BBC News NI. |
| Peter was 49 when he made an appointment with a neurologist and was sent for a scan. | Peter was 49 when he made an appointment with a neurologist and was sent for a scan. |
| "I was starting to struggle to meet deadlines (at work), which had never been a problem before, and during meetings, I wouldn't be able to think of a word when speaking," said Peter, who is originally from England but has lived in Northern Ireland with his wife, Jill, for several years. | "I was starting to struggle to meet deadlines (at work), which had never been a problem before, and during meetings, I wouldn't be able to think of a word when speaking," said Peter, who is originally from England but has lived in Northern Ireland with his wife, Jill, for several years. |
| "I remember the date very clearly, it was 14 January 2018 when the results came back and the doctor said: 'Peter, I have diagnosed you with having frontotemporal dementia'. | "I remember the date very clearly, it was 14 January 2018 when the results came back and the doctor said: 'Peter, I have diagnosed you with having frontotemporal dementia'. |
| "I was basically told that it was no longer safe for me to work because I have diminished judgment and I was losing my filter, so it was a lot to adapt to." | "I was basically told that it was no longer safe for me to work because I have diminished judgment and I was losing my filter, so it was a lot to adapt to." |
| 'It can manifest in different ways' | 'It can manifest in different ways' |
| Peter lives in Northern Ireland with his wife Jill | Peter lives in Northern Ireland with his wife Jill |
| Frontotemporal dementia is an uncommon form of the condition, which causes problems with behaviour and language. | Frontotemporal dementia is an uncommon form of the condition, which causes problems with behaviour and language. |
| "People think when you have dementia it's only about forgetting things but it's more complex, it can manifest in different ways. | "People think when you have dementia it's only about forgetting things but it's more complex, it can manifest in different ways. |
| "I don't want to be treated differently, it's imperative that people actually see the person, see beyond the condition. | "I don't want to be treated differently, it's imperative that people actually see the person, see beyond the condition. |
| "Sadly for many people, the diagnosis can take an awful long time and that puts an enormous amount of pressure on the family unit." | "Sadly for many people, the diagnosis can take an awful long time and that puts an enormous amount of pressure on the family unit." |
| What is dementia? | What is dementia? |
| Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning. | Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning. |
| Memory loss is one of the most common symptoms, particularly the struggle to remember recent events. | Memory loss is one of the most common symptoms, particularly the struggle to remember recent events. |
| Others can include changes to behaviour, mood and personality, becoming lost in familiar places or being unable to find the right word in a conversation. | Others can include changes to behaviour, mood and personality, becoming lost in familiar places or being unable to find the right word in a conversation. |
| It can reach the point where people don't know when they need to eat or drink. | It can reach the point where people don't know when they need to eat or drink. |
| What are dementia and Alzheimer's and how common are they? | What are dementia and Alzheimer's and how common are they? |
| More than 25,000 people are living with dementia in Northern Ireland, according to the Alzheimer's Society. | More than 25,000 people are living with dementia in Northern Ireland, according to the Alzheimer's Society. |
| That number is expected to almost triple to 60,000 by 2051. The Southern Trust is expected to have the highest number of people living with the condition by 2032. | That number is expected to almost triple to 60,000 by 2051. The Southern Trust is expected to have the highest number of people living with the condition by 2032. |
| While dementia is often seen as a disease of old age, about 5% of people with the condition are classed as having young-onset dementia. | While dementia is often seen as a disease of old age, about 5% of people with the condition are classed as having young-onset dementia. |
| The term refers to people whose symptoms started when they were under the age of 65. | The term refers to people whose symptoms started when they were under the age of 65. |
| The Alzheimer's Society estimates there are more than 70,000 people in the UK living with young-onset dementia. | The Alzheimer's Society estimates there are more than 70,000 people in the UK living with young-onset dementia. |
| A documentary has been made by members of Dementia NI | A documentary has been made by members of Dementia NI |
| In recent months, Peter has teamed up with other people in Northern Ireland living with dementia to make a film about their everyday life. | In recent months, Peter has teamed up with other people in Northern Ireland living with dementia to make a film about their everyday life. |
| The documentary, called Hear Our Voice, primarily focuses on people with young-onset dementia. | The documentary, called Hear Our Voice, primarily focuses on people with young-onset dementia. |
| It offers a glimpse of what living with dementia is like, in the hope that it will create better understanding and empathy. | It offers a glimpse of what living with dementia is like, in the hope that it will create better understanding and empathy. |
| Peter features throughout the film and narrates it. | Peter features throughout the film and narrates it. |
| "Respect was granted to people who have dementia to make and take control of the film to help us get across the unique challenges we have," he said. | "Respect was granted to people who have dementia to make and take control of the film to help us get across the unique challenges we have," he said. |
| Dr Christopher Southwell is a consultant in old age psychiatry in the Southern Trust | Dr Christopher Southwell is a consultant in old age psychiatry in the Southern Trust |
| The film features members of Dementia NI. | The film features members of Dementia NI. |
| The group was set up in 2015 by five people living with dementia, but 10 years on they now have 15 groups across Northern Ireland. | The group was set up in 2015 by five people living with dementia, but 10 years on they now have 15 groups across Northern Ireland. |
| The groups worked alongside the Southern and South Eastern health trusts when making the Hear Our Voice project. | The groups worked alongside the Southern and South Eastern health trusts when making the Hear Our Voice project. |
| Dr Christopher Southwell, a consultant in old age psychiatry in the Southern Trust, believes the film promotes a powerful message. | Dr Christopher Southwell, a consultant in old age psychiatry in the Southern Trust, believes the film promotes a powerful message. |
| "Dementia is a condition that has a big impact on patients and their families and sometimes as healthcare professionals we acknowledge that there are things that can be done better," he said. | "Dementia is a condition that has a big impact on patients and their families and sometimes as healthcare professionals we acknowledge that there are things that can be done better," he said. |
| "When I got involved and eventually watched the film, it was important for me to be able to say to people like Peter and others behind the film that I do hear your voice and take on board what you're saying." | "When I got involved and eventually watched the film, it was important for me to be able to say to people like Peter and others behind the film that I do hear your voice and take on board what you're saying." |
| Members of Dementia NI recently met Health Minister, Mike Nesbitt, at Stormont | Members of Dementia NI recently met Health Minister, Mike Nesbitt, at Stormont |
| Members of Dementia NI recently met Health Minister Mike Nesbitt at Stormont. | Members of Dementia NI recently met Health Minister Mike Nesbitt at Stormont. |
| They called on him to make reducing the time it takes to get a dementia diagnosis a priority. | They called on him to make reducing the time it takes to get a dementia diagnosis a priority. |
| Shortly after the film was released, in a statement, the health minister said: "I congratulate the trusts and Dementia NI for developing this powerful documentary which I have no doubt will challenge existing stereotypes and will be an informative way to educate people in how best to support individuals living with dementia." | Shortly after the film was released, in a statement, the health minister said: "I congratulate the trusts and Dementia NI for developing this powerful documentary which I have no doubt will challenge existing stereotypes and will be an informative way to educate people in how best to support individuals living with dementia." |
| 'Dementia doesn't define us' | 'Dementia doesn't define us' |
| Karen Kerr, head of engagement at Dementia NI, said the group's members were "passionate about the importance of getting an early diagnosis". | Karen Kerr, head of engagement at Dementia NI, said the group's members were "passionate about the importance of getting an early diagnosis". |
| "Once you get an early diagnosis it opens up a lot of opportunities so that you can continue to live well with a sense of purpose and that's also what the film is trying to highlight. | "Once you get an early diagnosis it opens up a lot of opportunities so that you can continue to live well with a sense of purpose and that's also what the film is trying to highlight. |
| "When you hear from people like Peter, I think it demonstrates that people with dementia have a voice not just for themselves but for everyone affected with dementia." | "When you hear from people like Peter, I think it demonstrates that people with dementia have a voice not just for themselves but for everyone affected with dementia." |
| Peter added: "When it comes to people like me with dementia, please don't write us off, we have a voice, dementia doesn't define us." | Peter added: "When it comes to people like me with dementia, please don't write us off, we have a voice, dementia doesn't define us." |