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Coping with dementia – Getting help

The Coping with Dementia DVD is made up of 7 chapters. This page features ‘Getting help’ – chapter five of seven and is made up of one short film.

It is up to you which chapters you watch and when. You can watch all the chapters in order, or you can watch a single chapter on its own in any order – choose what suits you best. Some chapters may be more or less relevant at different stages of your caring journey – if you don’t feel you want to watch a chapter now, you may want to view it at a later date.

Please be aware Chapter 7 contains sensitive information about the later stages of dementia and we suggest you only view this chapter when you are ready.

Getting help (chapter 5 of 7)

Transcript of the Getting help film

Well I think it was probably the first thing that instigated, for my mother anyway, was the care package, which she now receives, but she’s always been fiercely independent and one of the problems was getting her to accept help.

But a crisis arose very early on where she needed help to get tucked in at night and put to bed, but from that, I’m not saying floodgates, but it certainly opened the introduction to all the help that she presently receives and it doesn’t seem to have taken away any of that independence that she had and she now is more willing to accept it so that in itself was a blessing. Just whatever it was, was just introduce it, which took a lot of pressure off of us and also helped her I think, from now until the present time.

Community care services

The person with dementia has a right to a community care assessment from the social work department; call them to ask for an assessment, they’ll visit you. A social worker or other professional will visit and find out all about the sorts of services and support that will help the person with dementia continue to live their life. You, separately, have a right to a carers assessment from the social work department so ask for that too, to work out what would support you to carry on caring.

If the assessment shows that the person with dementia needs services, they will get a care plan with details of a package of care. Alternatively, if you have a power of attorney or guardianship order for the person, you can ask on their behalf for ‘self directed support’, also known as a ‘direct payment’. That means the social work department gives you control of the money they would have spent on the package of care and you choose what services to buy. The assessments are free but the person may have to pay for some of the services.

Home care services offer help with personal care such as eating, getting dressed, or other activities - like shopping. They might also give you a bit of time off, or can help someone who lives alone to cope safely for as long as possible. Private care agencies can also provide care at home.

Some voluntary organisations, such as Crossroads or Alzheimer Scotland, run schemes in many areas providing trained support workers for care and stimulating activities or outings. If the person you care for has Down´s Syndrome or a learning disability AND Dementia, Downs Syndrome Scotland and other learning disability organisations may be able to help you find the right support.

A place at a day centre can give the person with dementia a chance to socialise and stay active.

My mother didn´t want to go to the day centre at all, but I persuaded her to try it and went along the first couple of times. She loves it now! She goes on outings, paints, plays games... The time off helps me cope.

Caring for someone with dementia can be tiring and often stressful. A respite break, for example when the person with dementia goes into a care home for a few days or a week or two, will give you the chance to recharge. Other kinds of respite breaks are available too – for example extra care at home while you go away. Or you can ask about a direct payment, to give you and the person a holiday together, so that someone else does the cooking while you can relax.

Talk to the social work department about respite – you may be able to arrange regular breaks. If the person you care for can afford it, there is also the option of private respite in a care home. It may be that the person with dementia may not want to accept a service. Talk to them about the service you think may help – suggest a trial period.

Offer to be there the first few times. If they’re worried about a respite break, reassure them that it´s just a holiday, that they will be coming home again.

Free personal care and charges for care services

If the person with dementia is over 65 and is assessed as needing help at home with personal care, such as washing, eating or going to the toilet, this will be provided free. If they are under 65, they may have to pay. They may still need to pay for other things, such as day care, meals, housework or respite care.

Health services for people with dementia

If you are concerned about the physical or mental health of the person you care for, talk to the family doctor. If there is a lot to discuss ask for a double appointment. If you require an interpreter say this when you make an appointment and the surgery will arrange this.

Make a list before you go so that you remember everything. It’s important not to assume any change is due to dementia. For example, if the person is suddenly more confused, they may have an infection, which needs to be treated.

The dementia helpline can send you a useful booklet called "Getting Help From Your Doctor". The GP may refer the person to a hospital specialist for assessment or treatment. They may be offered a place at a day hospital or a stay in an assessment unit - for example, if they have especially troubling problems such as hallucinations or aggression.

Reviewed 09 JMarch 2018

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