A national conversation to inform a new Dementia Strategy

Dementia is part of our daily life. I was diagnosed at the age of 55 with young onset Alzhiemers disease. Since then it has been a series of many losses of freedoms and human rights. Being diagnosed has also had a profound effect on family life with my wife having to work full time whilst still being my primary carer. I have 2 sons and 1 daughter. My daughter would love to travel the world but doesn't because she feels she needs to be around to help. My middle son also feels he needs to be on hand to help. My oldest son has his own family to worry about but still feels the need to be on hand. My wife looks constantly tired and struggles with her own health issues yet is always there when I need her. Dementia has changed our family dynamics enormously. I used to be the main wage earner, I dealt with all the finances and did most of the the driving. These responsibilities are all now added to my wifes to do list.

Peer support is essential. In my experience it has been a life saving experience for people living with mild to moderate stage dementia. Access to PIP has made a big difference and has alleviated some of the financial loss. Post diagnostic support has been amazing where we live and words can't express how important it is. Having a good local dementia strategy actually managed by a person who really cares.

Dementia itself needs to be recognised as the terminal brain disease it actually is and not just a part of aging.
Access to post diagnostic support.
Self Directed Support. This would make such a difference, not just for the person living with dementia, but more importantly it would provide some sense of normality to the family who could then go to work, contribute to society and get back their feelings of self worth.
Public transport (namely buses) is just not up to a standard acceptable not just for people living with dementia but for many disabilities. It needs totally overhauled. Assistance for people with disabilities at airports needs to be seriously improved. Access to peer support should be made available at point of diagnosis, this is highly important.
Access to benefits needs to be easier and not such a post code lottery.

Dementia being recognised as the terminal illness that it actually is would in itself bring this disease on a par with Cancer, Heart disease and that alone I belive would change people's perception and how they react to it.
Access to post diagnostic support from point of diagnosis to end of life should be available for all. Having someone who understands to talk to is essential, not just for me, but for my family.
Access to Self Directed Support would enable me as a person living with mild to moderate dementia, to gain some kind of independence again. I could employ someone to take me to the gym, manage my emails, take me out for a coffee, take me shopping and just do things that many people take for granted on a daily basis. This in turn would allow my wife and family to be gainfully employed, free from stress, I will live a healthier life style as will my family. It will allow me to stay at home until I die.
At present i rely on the good will of others or a taxi to take me somewhere that i need to be. Improving public transport would allow me to go places and not be restricted to the house as and when friends aren't available. If it wasn't for the good will of people, I would struggle to get further than the garden gate.
Having recently experienced assistance for people with disabilities at Redacted textI can honestly say that it was extremely poor compared to the assistance received at the other end of the flight. The stress my wife in particular went through was awful to see and we almost missed our flight because we were left waiting for so long. Totally unacceptable.
Access to peer support at point of diagnosis would save lives. It would let people newly diagnosed know that they were not alone in their journey. It would let them see that help and support is available should they wish to take it. They would also see for themselves that a good life can still be lived with a diagnosis of dementia.
Being given a terminal diagnosis of any disease should automatically entitle you to PIP. This inturn would help to alleviate some of the financial burden brought on by loosing half the family income.

Build on and learn from some good practise that is already going on. Talk and listen to the people on the ground, in particular those with lived experience of dementia. People are happy to contribute time wise and financial wise but a good infrastructure is needed to support them. People with dementia living in their own homes and enabling family members to have peace of mind will save hundreds of thousands of pounds in care home costs. I want to live with my family and hopefully when the time comes, die in my home surrounded by my family. In my humble opinion, focus has to move away from entertaining people with dementia to empowering people with dementia by putting the foundations in place to allow someone like me to be more independent which in turn will enable me and my family to contribute both socially and financially to society and to live well as a family with dementia.

In Scotland we are already ahead of the game compared to the rest of the UK. Unfortunately it is such a post code lottery as to where the good practices are and if you are able to access them. Good practices needs to be standardised across the board. Talking to people with lived experience is definitely a step in the right direction so keep up the good work.