Living with dementia magazine February 2011

For many people with dementia, the ability to live well in their own homes is of utmost importance to their well-being. As we know, getting the right level of support at home is vital for maintaining quality of life and independence. Luke Bishop talks to two people who have different stories to tell about the support they receive at home.

Derrick Norman

When Derrick Norman was first diagnosed with Alzheimer's disease last year, his daughter, Sally Scorah, was concerned about how he would cope. Her father had been the full-time carer for her mother, who died of Alzheimer's disease, and was living on his own.

However, thanks to the support Derrick receives from his social care workers, who visit twice a day to help with household tasks and personal care, Sally is more relaxed.

She says,

'I've found that dealing with social services has been pretty positive. My mum had Alzheimer's disease and died seven years ago. It was different for her because Dad was there. It's a lot more worrying for my Dad because there is nobody living with him, but it is quite reassuring that these systems are in place to help him.'

Derrick places a high value on his ability to remain independent and stay in his own home. It is thanks to a strong support network from Sally and the rest of his family, as well as friends and health and social care services that he has been able to do this.

Derrick also takes advantage of Alzheimer's Society services in Sheffield. He attends a Home Alone group, a day centre and has a Dementia Adviser.

He says,

'They have been a lifeline, particularly with me living at home. If you live on your own and this unexpected diagnosis comes along then it is quite shocking. The home help really does help me, as does the fact I can turn to Alzheimer's Society, where I involve myself with various meetings.

'My neighbour is quite aware of my problems so if she hasn't seen me she will come around and bring me a meal which is very welcome. My aim is to remain independent in my own flat for as long as I am able to.'

Bill Allsopp

Full-time carer Bill Allsopp, 83, also aims for Dorothy, 79, his wife of 18 years, to live at home for as long as possible, but feels he has not received adequate support to enable him do so.

Bill, of Thornbury in South Gloucestershire, says,

'We've struggled to get the right sort of service and the right kind of care. It is out there, but it's finding out what's available and where to go to get it. You go down so many different routes and you have got to really beg for everything that you want. It shouldn't be that way. It's been a constant battle.

'The level of care locally was quite good until several months ago when they started cutting back and we recently lost the dementia care teams that were specially trained to work with people with dementia. Now we have nurses who have not had any dementia training whatsoever.

'With the dementia team, we used to get the same people four days at a stint but with the new nurses, we get two a day and then we get different people in another day. There is no continuity of carers. I think this is essential because you get used to the same faces coming round.'

Mr Allsopp says that he also had to fight to get a stair lift installed in his house because Dorothy is unable to walk. Bill says, 'I am quite prepared to stand up and be counted because I don't think anyone should have to accept this, and if I can win my battle, I might have won it for others.'

NOTE: South Gloucestershire council confirmed a reorganisation of the home dementia care service took place last year, meaning that some staff changed the areas in which they worked. A spokeswoman for the council said, 'We appreciate that change can be unsettling for people with dementia, and we are doing everything we can to minimise any upset. We take seriously all concerns raised and we will be contacting Mr Allsopp with a view to discussing his situation with him, particularly his concerns about training for home care staff.'