Skip to 0 minutes and 5 secondsI met my husband in 1985, when I went for holiday in India. I fell madly in love with him. And, God willing, I'm still madly in love with him. Dementia has not changed that. And we have three beautiful sons, all grown men. We have a beautiful life, despite the condition. But it's been a journey and a challenge, and I've gone through quite low periods. But I've come out pretty good, as you can see today. I think what project Project Neva does is people take an interest in him, and engaging with him, which clearly is sometimes lacking in society, because as soon as you get something like FTD or dementia, people have a different way of relating to you.

Skip to 0 minutes and 47 secondsAnd this project has opened up eyes that people are still interested in his input, despite his cognitive impairment. And he's been quite touched by that. So he goes, "What they are asking me these things? You know, most people don't really give me the time of day. What is this about?" So he was quite fascinated by that. [NON-ENGLISH SPEECH] [NON-ENGLISH SPEECH] [NON-ENGLISH SPEECH] [NON-ENGLISH SPEECH] [NON-ENGLISH SPEECH] Mm-mm. [NON-ENGLISH SPEECH] [NON-ENGLISH SPEECH] [NON-ENGLISH SPEECH] [NON-ENGLISH SPEECH] Yeah, for him, he says it's a source of happiness. What's a struggle is making others see our perspective. That's the problem I have, with it culturally. I think the Asian cultural sometimes doesn't understand about independent living, meaningful life. You know, the person is still there.

Skip to 1 minute and 36 secondsThey often don't understand it, so they just kind of say, oh, well, he doesn't really count. Carry on with your life. How can one carry on with your life when your life is wrapped up with the person you love? They're still part of your life. That doesn't change it. So I think the social exclusion, for me, has been the biggest challenge, and that's probably been my source of depression more than my husband's deterioration. So I would really encourage people who are watching this to really be brave and just kind of do the right thing. And, you know, reach out to people around you who know because this is on the increase.

Skip to 2 minutes and 8 secondsThere's always going to be someone you know who has dementia or something related like that. Don't be shy. You know, most people are good people and they want to do the right thing. So just do it. Don't wait for, you know-- don't-- take the risk. Be courageous. Because a person needs it. And the sad thing is, people with conditions like this, they need interaction. I'll give an example, I was working a few years back and my husband said to me, no one rings me, darling. And I said, oh. And he goes, yeah, no one rings me. You know, I had all these people ringing me, but the phone stopped ringing.

Skip to 2 minutes and 43 secondsAnd then I realised-- I said your world is becoming narrower and narrower. You know. And I think one thing that people need to raise, although the families can be caregivers, the person's life was not just the family. It was the family, job, friends, social clubs. They had all of that. If those all layers are coming-- falling apart, all they're left with is the family-- no matter how wonderful a family has, it's not going to be complete world for these people, and also putting enormous pressure on the family to be the best they can. I think society can do a lot by just engaging with them.

The Lived Experience: Urvashi & Bhupendra

Watch Urvashi explain the changes that have occurred in her and her husband Bhupendra’s life since he received his diagnosis of frontotemporal dementia (FTD).

For a refresher of FTD, you may find it useful to review step 1.7 of the course. The Rare Dementia Support resources in the ‘See Also’ section below may also be of interest to you, should you wish to learn more about FTD.

Do any elements of Urvashi and Bhupendra’s experience resonate with your own? If you are happy to, please share your reflections in the comments.

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This video is from the free online course:

Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives

UCL (University College London)