Winners and Loser in The Dementia Game

A social worker working with people with dementia in London told me recently that she doesn’t worry too much about those people with dementia who have a close and loving family. It’s the others that she is truly concerned about.

Having spent 8 years being a part of the dementia world, I’ve talked at length to everyone from those with dementia themselves to government advisers. So I started thinking about who really are winners and the losers in the world of dementia care; and is there anything people can do to make sure they are one of the winners?

Just like the social worker said, you stand a chance of being a winner if you have a close and loving family. But with dementia, I’m afraid love is just not enough.

At least one member of the family will also need to be willing and able to make themselves an expert in the medical side of dementia, will need to develop a real understanding of what constitutes good dementia care, and will need to know how to negotiate, and often argue with the various medical and care ‘experts’ that they’ll have to deal with. This is a complex minefield that only the very few most talented and dedicated family members manage to navigate successfully.

The family will have to quickly become knowledgeable about various parts of the NHS and what they can and should expect from them. They will need the confidence to challenge poor care when it occurs. They will need to have an understanding of the pros and cons of medication for differing stages of the illness.

They will need to become familiar with the responsibility of the local authority social care systems and how care funding works. If considering professional care, they will need to acquire the depth of knowledge to be able to judge what is, or is not good dementia care. If they can find a care home or agency that they feel meets all the necessary criteria, they may need to have the resources to pay a great deal of money for it.

Some people with dementia may have a loving and competent live-in partner or adult child who is capable of dealing with the day-to-day problems that dementia brings, who is in good physical and mental health and who is a caring personality type with an iron constitution and boundless energy. Most people with dementia are just not that lucky.

Many people with dementia have family who live far away, who have demanding jobs or demanding families of their own, who have their own challenging life problems, or who maybe just don’t love them quite that much. They may not be free (and they may not want) to give up work, move house or even to give the time on a regular basis for hospital visits or to deal with regular and recurring domestic crises.

So what does it feel like to be amongst the majority – one of the ‘unlucky ones’?

First may be the fear of knowing that you are losing the ability to function effectively in a challenging world, the fear of being at the mercy of others who don’t care enough. And with the UK’s current inadequate dementia care systems, this fear is totally justified.

With cuts in local authority budgets and ever-growing number of demands on their dwindling resources, those with dementia who have to rely on state help are really at the bottom of the pile. There are not enough social workers to sort out the complex and on-going problems and crises that will inevitably occur. There are even fewer social workers with any real knowledge of dementia and what constitutes good dementia care. In weighing risk aversion against human rights, social workers and other health professionals may choose to deem a vulnerable client unable to make their own decisions because they’re worried about potential physical harm from falling or ‘wandering’. For those with dementia this can result in inappropriate and unwanted admission to care homes that are effectively nothing more than bad prisons.

If someone with dementia is lucky enough to be in an area where there is a great home care agency with reliable, conscientious and caring staff, there is often just not enough money available to pay for what is really needed. Even if someone with dementia has family or a social worker to fight their corner, they may only receive an inadequate level of home care provision. They may not even be prepared to accept ‘help’. The next crisis all too often sees them unnecessarily taking up a bed in a hospital ward until a place in a less than adequate care home can be arranged.

If the family or the social worker sees a care home as the answer, then there are very few really good dementia care homes to choose from. And although there are some excellent dementia care workers in care homes, many others are inadequately trained, lacking in any real interest in or understanding of dementia and demoralised. It is no wonder, when many care homes are owned by people with no real interest in providing the best possible dementia care, are primarily profit driven or are too distracted by the ever deepening financial challenges. How can care homes even hope to attract enough great staff when care work is so badly paid and has such low status.

Even in the absence of loving family or friends, you may just end up exceptionally lucky and be placed in one of the few great dementia care homes; run by people who truly believe in offering good care despite the costs, staffed by people who don’t need a great income, and are only motivated by the opportunity to make a positive impact on people’s lives. Be sure to count your blessings.

If you’re not one of the lucky ‘winners’ in this dementia game, you may well end up being any or even all of the following: imprisoned against your will, miserable, depressed, bored, neglected, isolated from any meaningful human contact, even physically or mentally abused, longing for death or very, very angry… none of which sounds much like the kind of care we should be offering some of the most vulnerable people in the UK in the 21st century.

Helen J Bate

27th January 2014