Coping with dementia – Long-stay care

The Coping with Dementia DVD is made up of 7 chapters. This page features ‘Long-stay care’ – chapter six 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.

Long-stay care (chapter 6 of 7)

Transcript of the Long-stay care film

Deciding about going into a care home

Eventually you may not be able to go on looking after the person with dementia at home. This can be a difficult decision to take. Involve other people who know the person, and try to involve the person too. Alzheimer Scotland has a helpful booklet called "A Positive Choice: Choosing Long-Stay Care For A Person With Dementia".

Coping with feelings

When my mum was diagnosed three years ago with Alzheimers, and she moved into a care home, effectively, I was handing her over to strangers which was hugely difficult, I had massive guilt about that and felt I should be able to do that. When my dad was diagnosed with Dementia last year, and he moved into the same care home, the feelings eased slightly. However, I’m lucky because I only live five minutes away from that care home and I go and visit them daily.

They’re both different people, they have different personalities and needs. With my mum, I try to leave her with classical music playing in the background that makes her feel relaxed. With my dad, I always take him chocolate.

When Mum went into care it was a highly emotional time it was very, very distressing for all of us, you know herself included and the first few weeks especially were really, really difficult, the visits were difficult, we were both upset, I think we were both grieving. In time it got easier, things got better, I certainly eventually benefited from having a break, having regular sleep, not worrying all the time when I was at work about what might be happening to her. I built up trust, in time, that the staff would get in touch with me if there was something to worry about, if there was something that I should know.

Arranging long-stay care

The best way to arrange long-stay care is to ask the social work department for a community care assessment. This is essential for the person to get help with the care home fees, including the free personal or nursing care allowance.

Choosing a home

Contact the Dementia Helpline on 0808 808 3000 for advice on how to get inspection reports for the homes you are considering - all care homes in Scotland are registered and inspected. If the person is assessed as needing long-stay care, the local authority can arrange it, or you can choose a suitable home yourself, anywhere in the UK.

If the person needs help to pay the fees, the local authority has a maximum amount they will normally pay. If it costs more, you or another person can, in certain circumstances, agree to pay the extra. The booklet "A Positive Choice" has a useful checklist of what to consider when you visit a home.

Paying the home fees

It’s best, perhaps, to start with the financial assessment process, and essentially when someone moves into a care home, Local Authorities are required, by Law, to carry out a financial assessment. The purpose of that assessment is to determine whether that person is able to pay all of the care fees themselves and, if not, how much they can contribute and how much help the Local Authority needs to provide them with. The financial assessment is also interested in how much capital an individual has and capital takes a range of forms, it can be money in a bank account, a building society account, it could be shares.

Often the biggest concern for many people is the house because capital can also be property or land and people are frequently concerned about whether, in fact, they’re going to have to sell their house in order to pay for their care. There are, however, circumstances under which a property does not count. So if an individual owns property, and they move into a care home, it may very well count as part of their capital but, as I say, there are circumstances under which the Local Authority must disregard the capital, and that would include where the property continues to be occupied by the spouse, civil partner or unmarried partner of the person going into care. It would also be disregarded if it is occupied by a relative age 60 or over, or a relative under 16 who the resident in the care home is liable to maintain or, perhaps, a relative who has some kind of disability or incapacity.

Local Authorities also have discretionary powers to disregard the value of a property and a common example of that is perhaps where a carer who’s maybe given up their own tenancy or given up their own home and has been living with, or caring for someone who subsequently goes into care, if the house was sold then perhaps they would need to find alternative accommodation so Local Authorities quite often will consider, if people ask, using their discretion to continue to disregard the value of a property in circumstances like that. It’s a good idea around a financial assessment, I think as well for people to seek advice.

Often, I think, unfortunately, many people go into care without feeling fully involved in the financial assessment process or haven’t been explained by Local Authorities and many people will tell us ‘well actually I have no idea why I pay what I pay’ which is unfortunate, so it is a good idea for people to seek advice, perhaps, again from a Local Authority Welfare Rights Advisor or Citizen’s Advice Bureau, for example, or perhaps even a solicitor.

Free personal and nursing care in Scotland has had a huge impact on all of that as well – when someone is in a care home, free personal and nursing care essentially means that the Local Authority must make a minimum contribution towards the cost of the care. So a Local Authority would pay either a free personal care payment if the person was assessed as needing what would’ve been called Residential Care, and if the person is assessed as needing nursing care, they would receive a combined free personal and a nursing care payment which would contribute towards the cost of their care.

That generally affects mostly those people who are self-funding. Prior to the introduction of free personal and nursing care in 2002, those people would have paid all of the care fees but now they can receive quite a significant contribution from the Local Authority in the form of a free personal and nursing care payment towards their care fees and it essentially means that perhaps their capital or savings are not depleted quite as quickly as they may otherwise have been.

The move and after

The person may find it easier to settle in if there are familiar things in their room. Leaving the person for the first time on the day they move in is likely to be difficult for both of you. Try to arrange with the home that there is something they can be involved with when you leave. And remember yourself - is there someone supporting you?

Visits may also be emotionally difficult, especially at first, but some people settle in faster than others. Most people find that visiting gets more enjoyable. Your relationship may even improve now that you don´t have to deal with day-to-day caring.

The home will put together a care plan so help them by giving them information about the person´s likes and dislikes. If the person has a life story book the staff can use it to learn about their life. The booklet "Letting Go Without Giving Up; Continuing To Care For The Person With Dementia", is available from the Dementia Helpline.

If you´re not happy with the care home you can make a complaint. Ask the Dementia Helpline about how to complain.

British Sign Language translation of the Long-stay care film

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Reviewed 29 July 2014

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