Making a difference in aged care: a geriatrician speaks
Dr Janet Turnbull was recently interviewed by Michael McCabe and John Kleinsman. In this article she shares her personal insights on the challenges of caring for the elderly as well as the challenges faced by the elderly.
It is clear that many people are living longer. When I first started out in this field we mostly dealt with the 70 and 80 year olds. The 90 year olds were rare. Now I often work with people in their 90’s. We are dealing with a much older group of people, they are frail, and often have multiple problems which cause a significant disability but we can help them keep going for a long time, often years.
The elderly don’t live in the community in the way they used to. Older people may have for generations moved from their home to another place. They used to move in with a younger relative or live in a ‘granny flat’. That does still happen, particularly in the Pacifica cultures. Some of those families are just brilliant; they can give better care than almost anybody because they have big families and they often do it in relatively frugal circumstances, (I am generalising here but that is my personal experience from home visiting). Increasingly today, many families may find themselves reaching their limit because a lot of the younger generation are now working or studying. They have invested in education and then get jobs that they cannot just drop and pick up again, or if they do they have to put their careers on hold.
Sometimes we do a home visit and note that, while the patient is being looked after, the care is not being done in the way we would do it. We sometimes feel like we are walking a tight line. However, if the patient seems to accept it, and the family is comfortable with the care, we provide more visits or get more respite – it is a matter of balancing things out.
I think a lot of societal forces now are encouraging the elderly to downsize their houses and to move to another place where there is a lot more social activity. The policy of ‘ageing in place’ can mean that elderly people can become socially isolated as they gradually become more disabled, particularly if they do not drive. The move to develop retirement villages is a relatively new concept from the last twenty years; people move into a villa with a view to then moving on into an apartment and eventually into a rest home – you have to have some money to do that, also a degree of financial nous.
Older people’s attitudes
Some older people are very conscious of the fact that they may be a ‘burden’, which is what they don’t want. Physical disability often requires help. There is a real reluctance amongst the older people I work with to ask for help because they are generally very independent minded. Many of them were young people in the depression so they know about deprivation. They have also lived through and survived the Second World War. I think it is a genuine feeling of not wanting to put pressure on people. They are generally a more self-effacing generation, although there is very often a mixture of pride in their stance.
It is also, at least partly, a knee-jerk reaction to the loss of their independence; if you see that your physical needs put pressure on other people it makes you realise that you are not independent. A lot of people are aware of the stresses that their families are under these days. So it is about concern for their families as well.
Euthanasia is an issue people come up with and talk about a bit because they feel they are a burden on their families. But they don’t talk so much about being a burden on the State.
As people live longer, the number of older people with dementia will increase. This is a big issue. The big ‘problem’ 30 or 40 years ago was heart disease. We deal with that much better now through diet and managing blood pressure. But people who survive heart disease in their 60’s have an increased chance of developing vascular dementia because of their vascular risk factors.
Dementia is a cruel illness because it involves the actual disintegration of a personality and there is not a lot that can be done with medication. It is critically important to support the person and their family so that they understand what is happening – that is where we can make a real difference to quality of life.
We see many instances of a spouse looking after someone with dementia. The ‘well’ spouse will often try to cover up and compensate for the spouse with dementia. It can often appear to health professionals that some people have become unwell very suddenly, but when we look more closely we discover that they have been unwell and cognitively impaired for a long time. They come to our attention because the partner or spouse caring for them has suddenly died.
With the right kind of support, many people with dementia can remain out of institutional care for a good part of their illness . We need to develop the kind of understanding towards dementia that we have for people with heart failure or cancer. They can manage their own money with some assistance, and some manage to live at home for many years. Some of them still drive their cars at the start of their illness. It is a matter of getting more information to the public so that people can understand dementia. The community need is for education.
Societal attitudes to the elderly
We hear a lot about the onrush of the grey tide, a tsunami which these days is associated with horrifying imagery. It is generally described as a financial problem because the changing situation is mostly analysed from an economic or monetary perspective – as if people are to be valued by how much money they earn or how much tax they pay or the businesses they had.
We talk about all older people as if they are a threat to us. I don’t see the fact that we are ageing as a big problem because we could choose to see elderly people as a resource. The unpaid or non-monetised functions of old age don’t always get raised in the media. We could see people as useful in themselves. Experience is also valuable. The elderly are too easily judged as a potential financial risk on the health system and the fact that most of a person’s health care resources are spent in the last year of their life is sometimes mentioned in a pejorative sense. I ask: Why not spend money when it’s needed?
Even if we take an economic perspective, it should be remembered that people are still a resource because many can and still work into their 60’s and 70’s. They can still contribute financially (if that is how we judge people), they can still support people. Consider the volunteer base and the number of grandparents looking after grandchildren. We can still be an important part of society when we are older. Surely we don’t need to be seen as a problem simply because we need a bit of money from the State? If we are driving a car, if we are fixing our houses, if we are looking after grandchildren, if we are doing a bit of volunteering, we may not be earning lots of money but we are still making an important contribution.
In fact, the cost to the State that people argue about is that of a certain proportion of people who actually go into care. While a lot more people are going into care, they are staying a shorter time because we are getting better at keeping people at home. When they do go into care, they often die quickly. In fact, the elderly are not demanding more and more resources as they age.
To date anyway, we are actually managing it. It is only a small proportion of the elderly who are very disabled and who require lots of resources. We need to remember that many people who own their own house and have retirement savings actually pay for their care themselves. With improvements in health care, many of us will remain healthier for longer. Yes, we will need to access health care in the last year of life but we may also have contributed another 10 to 20 years of life while doing lots of other useful things.
Provision of aged care services
The work with the elderly is largely undervalued. It is seen by many as little more than ‘wiping people’s bottoms’. I don’t think we spend huge amounts on the older adult, but if you see it as money you should be spending on other things, then you will see it as expensive. Many of the work force that I see in aged care facilities are immigrants which leads me to wonder: Do we as New Zealanders not value this type of work? Is it because some of it is poorly paid?
The bigger care facilities are striving to be professional in terms of providing education for their workers. It appears to me that some parts of the elder care industry don’t keep staff because they don’t pay them a lot. If you have a high turnover of staff, you lose experience and initiative in organisations. Being low paid, this sort of work is not seen as attractive to many people who want a career. What happens when you have a poorly paid work force? It undermines good care. Education and stability will deliver better care. Nevertheless, there are some fantastic workers who stay in the industry.
We would actually prefer to manage people at home if possible (although institutional care is very important for some). Most of home based care, in fact 90% of it, is provided by primary health care providers; the GP working with nurses, engaging with the elderly person and discussing issues with family.
There are the providers who deliver care in the home. These workers often don’t get paid appropriate wages for caring for patients with significant health problems – such as cognitive impairment and multiple medical problems – who struggle with even the basic activities of daily living. I suspect people assume that wiping bottoms is seen as something anyone can do. In fact, encouraging someone to dress themselves, take their pills, and eat their meals and be set up for the day often takes a great deal of patience and skill. Organisations often allocate an hour per visit, but we also stack up the number of people they need to see in a day. Like many parts of the health system, it is under severe strain; the fat is being squeezed.
Racial differences in health outcomes and access to care
We very rarely see Pacifica or Maori in their 90’s. It happens occasionally. While it is more common for them to live into their 80’s now, many die in their 70’s. I vividly recall Don Brash talking ten years ago about ‘a society for everybody’. If you are pakeha, you tend to have a stroke in your 70’s and die sometime after that. On the other hand, persons of Polynesian descent who are living in Porirua are having strokes in their 50’s and 60’s. How can anyone say that is equitable? How can we possibly live with a system which delivers that sort of inequitable outcome?
Part of the problem is access to health care. Often enough the health care is available, but it is not delivered in a way that allows people to easily access it. There is also a cost associated with receiving care which can also act as a barrier for some. Older adults generally do well if they can establish contact with a regular GP or health practitioner. A good general practice can provide excellent support provided people are able to access it. The issues with the really old relate to their increasing disability. The question is always: have we offered people support when they needed it and how they needed it? Do we do it in the right way? Is it culturally appropriate and safe for the patient?
When I encounter elder abuse, it is often related to the stress of caring – someone handled roughly because the carer just can’t cope any longer. It is unacceptable, but it is understandable. It happens mostly at home and with the person’s own family.
But it does happen in institutions. Sometimes it is because the wrong people have been chosen to work in that institution or because of poor management.
The instances of abuse that come out in the media are often the consequence of poor management in care facilities; less than ideal practice, not reviewing things. They are often related to a lack of knowledge, which is why facilities are now required to have strategies in place to deal with problems that arise.
It is always very difficult for families to put a family member into care. No matter how good it may be, individual care is replaced by the institution. The loss of one to one attention, which may have put the carer under a huge amount of stress, is still a change - things will never be the same.
Vision for the future
I see the Geriatrician’s role as making a difference in the lives of the elderly and their families. There is always something that can be done to make that difference even if it seems to be a small event. It’s about paying attention to people as individuals no matter how difficult that becomes.
There has been a huge explosion in the professional care industry in the last twenty years and I believe there will be yet more retirement villages being built because they represent a ‘good investment’. Back in the nineteenth century there were the poor houses and various other institutions. I sometimes wonder whether we are just revisiting institutionalism in a different way. I also wonder about how we will be able to support those who aren’t part of the upper or middle class – those people, for example, who used to live in council flats? How can we get affordable housing for these people? Do they just go into care somewhere or do we put personal health care resources into supporting them where they have always been living?
We have to work on reconnecting families. Children and grandchildren need to know that being family does not mean it is always going to be their sole responsibility to care for an elderly family member. I think people know that deep down, but all that ever seems to come out of the media is sensationalist reporting about the grey tsunami and the poor young people who are going to have to support their elders. Of course, in some ways that is true, because caring for our elders is what families have always done. But, we will be doing it in ways that are radically different, and in ways that are still to emerge. This does make it difficult for many people to understand what is going on right now.
The other important thing is the sense of history and continuity which dies with our old people if we don’t tap into it. Our society is the poorer for ignoring the stories which our elders can tell.
Something I think a lot about is that it would be nice if we took the fear out of being old and accepted it as a part of reality. It can be awful getting old. It can be really difficult getting old. But it isn’t always like that. We have to get away from all the generalisations and engage with the reality of life. We need to see old age as a possibility for growth and handing on knowledge.
Dr Janet Turnbull is a Consultant Geriatrician and a Fellow of the Royal Australasian College of Physicians. She has more recently trained as a Palliative Care Physician. She works primarily in the public health sector and for a community hospice.