Dementia care is not only about the disease; it’s about a person’s whole life. And in dementia care it’s often the little things that matter more than anything.

Why dementia care is not only about dementia

Every time I go to a funeral and listen to the eulogy, I find it sad that many people at the service won’t have known the person’s life story until that moment. Knowing it while the person is still alive makes such a difference to the way we relate to that person – and it can make a huge difference to the way we care.

I know there is already some great work going on in improving dementia care in many care homes – reminiscence rooms, life stories, and so on – and it’s always good to see care that does take account of who the person is ‘behind’ their dementia.

It’s so much better for the people delivering that care too – a richer experience, and a deeper understanding of the behaviours that a person with dementia might display.

Personal insights into dementia care…

My father was in a care home with my mother. They both had dementia. My father’s behaviour could be aggressive, and he was thought to pose a threat to my mother, requiring him to be repeatedly removed from her room. But no one had taken the time to understand his behaviour.

My father displayed this aggressive behaviour for one simple reason: He had two daughters and a wife. He’d had two daughters and a wife since the age of 30, and a man of his generation considered himself the protector and provider for his family, as indeed he was for many years. In later years he had also been carer for his wife.

His own dementia meant he no longer understood why all control had been taken away from him; he had lost his sense of identity and was bewildered and angry. He didn’t want to harm his wife; he wanted to continue to be her carer and continue to express his love for her in this way. It was heartbreaking.

His dementia care needed to be about his whole life, and the effects of the disease were not just about what was physically going on in his brain.

Recognising what actually makes a difference in dementia care – and why the little things matter

I can understand that it’s often very difficult to care for someone with dementia, especially if they display challenging behaviour, too. I’ve seen some lovely examples of really thoughtful care that warms the heart. Equally I’ve seen examples of completely thoughtless care – where someone is going through the tasks of caring, but without regard to the person they’re caring for.

The examples that spring to mind perhaps highlight some of the things that may go unnoticed in formal training…

The A&E doctor who was perplexed when a (different) relative of mine with dementia couldn’t answer his questions. I still don’t really know what he was expecting.

Two nurses in the hospital ‘Observation’ ward firing instructions at a lady with dementia when trying to change her pad, and expecting her to comply. When she didn’t, their instructions just got louder.

My father became withdrawn in the care home. It turned out he was in pain from bleeding gums and toothache, because no one had been cleaning his teeth, and he no longer knew how.

Leaving someone with dementia in front of a TV can be hugely distressing, especially when they never usually watch TV, when they’re distressed by the sound and the images and they’re unable to turn it off.

My mother was so weak that her head always dropped forward. She was also very confused about where she was, often thinking she was at home. Given that she couldn’t raise her head, it was understandably difficult to feed her. However, this still needed to be a thoughtful process. A carer pushing my mother’s head back quickly in order to get food in her mouth, just didn’t appreciate how terrifying that would then be for my mother to suddenly see a roomful of people she didn’t know.

Cleaning and trimming someone’s finger nails can make someone feel so much better. And enabling someone who has to be taken to the toilet to actually wash their hands afterwards (or have them washed), leaves that person feeling infinitely better.

These are all little things in the main – but they can make a huge difference to a person with dementia. Ignoring the little things makes the impact of dementia so much worse.

What are your observations of the little things that make dementia care better?

For a son or daughter, talking to a parent about the need for care can be very hard

Knowing how to start the care conversation can be very difficult. Not only are the usual family roles reversed, with the son or daughter effectively becoming the ‘parent’, but there are also delicate issues of maintaining trust throughout.

In the case of a parent with dementia, for example, the parent will often not realise that they need care, and that makes things more challenging for the family.

This problem can of course also arise with a relative with other health challenges who is reluctant to accept they need help or who is perhaps afraid of losing control or moving out of their home.

Ideally the conversation would start before your relative needs any care – by making sure they have made a power of attorney. Waiting until they actually need care before you do this can make things more difficult.

Someone with dementia may not be aware of the hazards and dangers they’re exposed to without care, but how far do you go in forcing them to have care?

Perhaps the person is no longer able to wash and dress properly, but seems unaware of this.

Maybe their short term memory is such that they don’t remember what they have or haven’t done at any given time.

Perhaps they insist they can still ‘pop to the shops’ for anything they need, when the reality is that they don’t – and can’t.

They may be adamant they’re eating properly, and yet it’s clear from their weight loss that they’re not.

And of course, if you do manage to start the care conversation, but your relative doesn’t remember afterwards, it can feel as though you’re continually back to square one.

If you’re in this kind of situation with a relative, or if you have been in the past, how have you handled the care conversation? Have you involved other support services straight away, or have you handed things on your own? Have you been able to put care in place carefully, without too much objection from your relative, or has your relative refused to let carers in?

Add a comment below to share your your own experience and ideas. It will be really valuable for others in the same difficult situation.

The NHS Reforms in England take effect from April 2013

Here’s a quick overview of the changes (and some thoughts on NHS Continuing Care):

• All Primary Care Trusts (PCTs) and Strategic Health Authorities are being abolished.

• General Practitioners (GPs), along with hospital doctors and nurses, are now in Clinical Commissioning Groups (CCGs), to buy in and provide health services for patients. They have responsibility for 80% of the NHS budget.

• These new CCGs are taking full financial responsibility for commissioning care/services – including, in most cases, managing the NHS Continuing Care assessment process. Given how little many GPs seem to know about NHS Continuing Healthcare funding, this could however leave people even more vulnerable in the assessment process – and it may transpire that those who hold the purse strings from April 2013 actually know even less about the legalities surrounding Continuing Care than many PCT assessors previously demonstrated.

• The new National Commissioning Board oversees the CCGs and is responsible for some specialised services on a regional and national basis.

• New local and national HealthWatch bodies are located within local authorities; these will (in theory) be able to prompt inspections of the NHS.

• The CQC has been given more power across health and social care. The CQC is itself the subject of much bad press for its ineffectiveness in properly inspecting care homes.

• Hospitals will be able to accept many more private patients. Where does that leave priorities and resources for frail elderly people in hospital, who, as seen frequently in the press, are already seriously neglected?

• Health and social care bodies need to work together more.

• The NHS regulator, Monitor, has a duty to promote better integration between care services.

• In addition, the government is rolling out Personal Budgets – and is first targeting people in receipt of NHS Continuing Care. However, Personal Budgets do not seem to always cover the full cost of care – and this could certainly be a viewed as a way of saving money, not of providing better care. And who will manage a Personal Budget for an individual elderly person with dementia in full-time nursing care?

Patient choice

In the reforms…

“Patients will have choice of any provider, choice of consultant-led team, choice of GP practice and choice of treatment.”

If GPs hold most of the budget power and it is advantageous to live near the best GPs who understand specific care needs, where does that leave people who are isolated in care homes with no choice of GP, no power and no means to relocate?

It could potentially lead to a return to the postcode lottery that the National Framework for NHS Continuing Healthcare sought to end, where every health authority had its own rules about funding nursing care.

Let us know how the NHS reforms affect you – good or bad.

Andrew Lansley, Secretary of State for Health, and his coalition colleagues have paused the progress of the Health and Social Care Bill through parliament for a month.

The government wants to listen to concerns and consult with key stakeholders. The Bill will now return to the Commons in mid June and go to the House of Lords in mid July.

The Bill proposes massive changes in the NHS, but is being introduced so swiftly that many patients as well as NHS and local authority employees and other bodies involved in health and social care feel they have not had enough time or opportunity to understand the detail and have their concerns heard.

In a nutshell, the new reforms will see the abolition of all Primary Care Trusts and Strategic Health Authorities. These bodies currently hold most NHS budgets.

80% of the NHS budget will now, instead, be placed in the hands of individual GPs.

GPs will form themselves into consortia to manage the money, no doubt spending a significant amount on management consultants. The Bill has not yet been approved, and yet GPs consortia are already appearing in some areas. These consortia are in effect businesses, whose primary aim is to make a profit.

When my mother was in full-time care she did not have a GP. She saw whatever doctor happened to come in to the care home. There was no doctor-patient relationship. When I needed the help of a GP to sign some documents relating to my mother’s care, no GP would help – because none knew her well enough to comment on her health.

Once the reforms go through, who will check that elderly people – particularly people in care homes – remain on the radar of local GPs?

And what checks are in place to make sure the most vulnerable elderly people in our communities and care homes still receive good care, even when it doesn’t make a profit?

This clear conflict of interest is something the government should certainly be pausing to consult on.