The positives for us mostly came within the first few years after diagnosis.
My late husband, who died last year, was diagnosed at 58 (he survived for 6 years). He had been made redundant four years previously and had not been able to get back into full-time work, and any part time work he did secure was short-lived.
His self-esteem was at an all time low and he regularly referred to himself as 'stupid'. The nasty way he was dealt with at the job centre did nothing to make him feel he was anything other than lazy - despite the fact that, other than the four years of redundancy with occasional temp work, he had worked almost solidly for 36 years. In fact, it was so stressful for him that he only signed on at the job centre for the first year of redundancy (to activate our mortgage protection insurance) and after that he just tried to find work under his own steam, including voluntary work, without the constant pressure of trying to prove his sincerity or availability to the job centre.
So for us, the diagnosis was something of a shock - but also a revelation which helped us have a more positive outlook. He could stop thinking of himself as stupid and instead know that he was ill and that there was a valid reason why he could no longer do the kind of work he'd always done.
With the diagnosis, he was empowered to stop his struggle to find paid work and, instead of being labelled 'unemployed' he stepped into the lovely world of early-retirement at the age of 58, thanks to his private pension. He took this path as it was preferable to applying for ESA, which would have kept him in stressful contact with the job centre and continued assessments. In short, the hostile system scared him from claiming or trying to find out what he was entitled to.
Never an idle man, and always happy to socialise and meet new people, he wanted to use his new 'free time' in a constructive and worthwhile manner. He continued his voluntary work at a charity shop one or two mornings per week. By the time the shop closed 18 months later he had already joined a Men in Sheds group which restored donated furniture to sell and raise funds for the local hospice, so he continued with that. He wasn't able to use the machinery there but could do basic manual work such as sanding down, painting or varnishing.
For a while he also joined the local Community Champion volunteer scheme. The volunteers were provided with iPhones by the Council so that they could take pictures of eyesores they might come across in their day to day lives (fly-tipping, animal fouling etc) and then send them to the Council with the location automatically tracked by GPS. He left the scheme within a year because he lost his ability to use the phone - but he continued in his own way by sending in reports via the website after I helped him write down the locations when we were out and about for walks.
These activities all gave him a sense of self-worth and value within the community.
Always a good bowler, he had some good friends who helped him participate in the game for as long as he could. Former work colleagues invited us to their get-togethers (until travel by public transport became too much) and his friends also helped me get him to some cricket games until he was unable to enjoy the atmosphere any longer.
When overseas travel became impossible, we enjoyed day trips through a local coach company. We also joined dementia cafes and clubs where we developed a wider circle of friends to socialise with - and through which suitable outings were organised.
There was also a social group for people with dementia and their carers run through the borough's libraries. He loved being at these because a library felt like a second home to him. We also managed a few theatre trips to a small local amateur theatre. Not deliberately dementia friendly, but being small and friendly in general, it was much less overwhelming than going to a bigger, professional venue.
When we were unable to join our local Singing for the Brain group we were lucky enough to find a 'fun choir' for people with dementia and their carers in a nearby town. That was something neither of us had ever envisaged doing! It wasn't a new hobby as such, but definitely a new experience
Overall, we did well and our lives were definitely enriched by the lovely, caring people we would not otherwise have met. However, one of the negatives was that the onus was always on me to do the research and find the opportunities available to us. If I had relied on the professionals, or had I not been savvy with the internet, we would have had a very different and much more isolated life.
As for how it impacted on my/our lives, I don't want to give the impression that it was all rosy.
Being a couple/family affected by young-onset dementia, we had a mortgage to pay off and my work hours were reducing year by year as my husband needed my help at home more and more (thank goodness I had a very flexible and understanding employer on my side from day one, many don't). We were also helping support a child through university. The mental health of both our children was impacted.
Looking back there were undoubtedly some extremely traumatic times as the dementia progressed. Very challenging behaviour and extreme paranoia made several appearances in the latter two years. It was hard to deal with as my husband was naturally a kind, peaceful and quiet man and at 6ft 2ins, he was fondly known as 'the gentle giant'.
On the negative side, it seems the whole care and support system waits until you hit a crisis point before stepping in to do something.
For instance, before my husband's first crisis (fourth year after diagnosis) I spent two weeks warning professionals that he needed help quickly. I am still aghast that when my husband was in the throes of paranoia, believing I was about to kill him, I was asked to 'put him in the car and drive him to the surgery' rather than be offered a house call! There was no comprehension of the seriousness of the situation until it escalated into an actual physical attack driven by my poor husband's increasing fears that his life was in danger.
It was the same two years later when his second crisis occurred. We were 'on the radar' for nearly two weeks as things got more and more out of control, but nothing was triggered until a physical attack happened, though I am pleased to say that the care, understanding and support that followed this time around was a huge improvement to the first time.
I would not want to go back to those days of torment, but despite all that happened I can honestly say the experience from start to finish made us stronger both as a couple, and as a family.
I also feel blessed that, during those six years, I came to know a side of my husband from the days before I came into his life, a glimpse of experiences which helped shape the man I eventually fell in love with. I often referred to it as 'seeing the child within' and it strengthened my love and understanding of him.