Independence is top concern as people age with MS

Nearly 2,000 people from 70 countries took part in the MS in focus online survey about ageing with MS. The survey ran during October and November 2014.

More than three quarters (80 per cent) of respondents were women. More than a third were aged between 51 and 60, with a quarter aged between 41 and 50.

Fifty seven per cent had relapsing-remitting MS, 5 per cent progressive-relapsing MS, 22 per cent secondary progressive and 11 per cent primary progressive. Twenty nine per cent had had MS for more than 20 years.

Three quarters of respondents say independence is their main concern as they grow older. The next most common concerns were developing memory issues or dementia (cited by 46 per cent) and economic issues (41 per cent).

‘I fall a lot. I also worry about how I would cope if my husband was not there to support me’

‘As I live alone, my main concerns are about continuing to be able to look after myself and risk of accidents at home’

‘Partners don’t plan on becoming full time caregivers!’

Surprisingly, 30 per cent of respondents have not budgeted for older age, with another 46 per cent saying they have budgeted ‘somewhat’.

‘I had to give up my job and I have a small works pension but no savings’

‘I am very, very fortunate in that I was offered and accepted early retirement with full pension. I know this is unusual and I fear for others with MS who are less fortunate’

‘I had to sell my own home as I could no longer have care in it. This money is used to pay for the rent for living in a group home’

42 per cent of respondents have considered but not carried through with making a will or advanced directives for what happens should they become ill. About one-third have these measures in place.

Download the full survey results