SPECIAL SECTION: AGED CAREThis section includes key presentations from the seminar ‘Ageing in Place—Nutrition andOther Aspects’ held at Sydney University on 10th June 2009.

LECTUREThis paper is a transcript of the speech provided by John Watkins, CEO Alzheimer’s Australia NSW.

Increasing the policy focus on nutritional issues forthose at home with dementia: What do we need?ndi_1376 234..237

John WATKINS and Jo-Ann BROWNAlzheimer’s Australia NSW, Sydney, New South Wales, Australia

INTRODUCTION

Clearly issues of ageing will become very quickly the mostdifficult and discussed issues of the next 20 years. As a directresult of our rapidly ageing population, the problems ofageing will, with climate change, dominate the economic,social and political agenda of the next 50 years. The decisionby the Federal Government in the recent budget to increasethe age when the pension is paid to 67 years is just theforerunner of a multitude of economic, health and socialinitiatives that will be forced by the ageing baby boomercohort. One of the enduring descriptors that will characterisethat debate will be ‘Ageing at Home’. People should live wherethey wish. For most that means home. The place we yearn forwhen we are away. The place where we feel comfortable.

This concept, supportable for all the best social and healthreasons will become, if it has not already, absolutely requiredfor economic reasons. Unless the bulk of our ageing popu-lation remain in their own homes as long as possible theburden of ageing will simply become unsustainable. It is notoften that good economics matches good social outcomes,but it does here. Tragically, the chief driver of these socialand economic pressures will be the dramatic rise inAustralians diagnosed with dementia in coming years. Mycomments today come from a dementia context, but Ibelieve the lessons for nutrition and dementia can be shared.

AUSTRALIA

Dementia is the term used to describe the symptoms of alarge group of illnesses that cause a progressive decline in aperson’s cognitive functioning. The loss of memory, intellect,rationality and social skills are some of the symptoms.

Currently, it is estimated that there are 230 000 people inAustralia who have been diagnosed with dementia.1 Thatfigure does not include the undiagnosed or those with mildcognitive impairment. Of those diagnosed over 10 000 haveYounger Onset Dementia, that is, diagnosed when under theage of 65 years.1 Disturbingly, it is projected that by 2030,over 465 000 Australians will have dementia.1 By 2050, thatnumber is expected to grow to 730 000.1 This huge increaseis driven by the ageing of our population. One in fourAustralians over 80 years will develop dementia.2 Alzhe-imer’s disease is just one type of dementia but accounts forapproximately 60% of all dementias.2 In short, when wediscuss dealing with ageing issues we are nearly alwaystalking about dealing with dementia. This is the huge healthcrisis coming our way. Currently, dementia is the fourthbiggest killer of Australians.3 Within 20 years dementia willbecome the largest killer of Australians and overtake cancer,heart disease and stroke.4

Around the world most people with dementia are cared forat home. In developing countries this is due to lack ofalternative facilities and more importantly due to culturalinfluences. In developed countries we have moved to a phi-losophy of community care and ‘ageing in place’. I prefer tocall it Ageing at Home or—Ageing in my Home! Again, that iswhere people want to be, and should be, as long as possible.

DEMENTIA CARE

Currently in Australia 60.3 % of people with dementia live inthe community, up from 57% in 2005.1 Approximately 37%of these people receive no formal care.1 Inevitably largernumbers of ageing Australians living in the community, oftenwithout adequate care, means that nutrition will becomea central issue for policy-makers. Better nutrition meanshealthier ageing and people staying longer at home. Goodnutrition is therefore economically essential.

Because of the changing nature of our society, with morewomen in the workforce, people choosing not to have chil-dren and smaller family groups, in 20 years time, the

J. Watkins, LLB, MA, DipEd, Chief Executive OfficerJ. Brown, BSocSci (Hons), MPASR, Research OfficerCorrespondence: J. Brown, Alzheimer’s Australia NSW, PO Box6042, North Ryde, NSW 1670, Australia.Email: jbrown@alznsw.asn.au

Accepted September 2009

Nutrition & Dietetics 2009; 66: 234–237 DOI: 10.1111/j.1747-0080.2009.01376.x

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required number of carers for people with dementia will seea shortfall of 150 000. This huge shortfall in the numberof available carers will place real pressures on the desiredoutcome of ageing in place. When you also consider theneed for carers of those ageing Australians who do not havedementia, the size of the problem is truly daunting.

For our discussion today comments will concentrate oninformal carers, those people, usually family members, whocare for a person with dementia at home. It is they who oftenmake the chief decisions relating to nutrition of the aged.That is, what to feed Mum or Dad or a spouse. In Australiathere are an estimated 165 000 people providing informalcare to people with dementia at home.1 In 2008, 203 millionhours of informal care was provided by family carers.1

Normally, it is a long-term commitment with the averageduration being 3.3 years.1 And that means a lot of meals.

One example comes readily to mind. A 78-year-old manhappily married for over 50 years with a large family. Retiredfor more than 10 years, he was enjoying a happy life with hiswife, who was a full-time homemaker and the cornerstone ofcare in the family. The man would often cheerily describe hiswife as ‘the chief cook and bottle washer’. Then she wasdiagnosed with dementia. He knew very little about domes-ticity and could not imagine a life without his wife. He wantedher to stay at home with him for as long as possible but did nothave a wide range of skills to support that wish, especiallyculinary. I know this first hand as he was my father.

As Mum lost the ability to adequately plan and thenprepare a meal, Dad willingly took over, surprising his chil-dren who never remember him darkening the doorway ofthe kitchen. But that lack of practice became evident in hismeal selection and presentation. A small quiche, a quarterof a tomato and a small lettuce leaf were a feast to Dad.Mum would eat a little and then push the rest around herplate for a while until Dad whisked the plate away. He triedhard but did not really have the skills and Mum suffered forit, quickly becoming frail. It was not Dad’s fault. He just didnot have the skills. The situation was repaired a little as myfamily, my brothers and sisters, took over that role, but itmade very clear to me the challenge and importance ofgood nutrition.

NUTRITION FOR THE PERSON WITHDEMENTIA AT HOME

We want people with dementia to stay at home for as long asthey can because that is what the carer and the ageing personusually want. For that optimum situation to occur, we needto look at all the features that come into play. Obviously, oneof the most important features is nutrition. Once a person isdiagnosed with dementia good nutrition is often overlookedor at best challenging to deliver. A person with dementiamay

Experience a loss of appetiteDevelop an insatiable appetite or a craving for sweetsForget to eat and drinkForget how to chew or swallow

Experience a dry mouth or mouth discomfort, oftenfrom dental/gum problems they are unable tocommunicate

Be unable to recognise the food and drink they aregiven, or

For those living alone, may simply forget to eatThe nutritional requirements of someone with dementia

can be similar to other people of their age. Some people withdementia, however, experience increased physical activity,such as pacing, which means that their required energyintake is higher than normal.

In 2007 Alzheimer’s Australia NSW updated a resourcecalled At Home with Dementia, for the NSW Department ofAgeing, Disability and Home Care.5 This is a valuable tool forall those living with someone with dementia and covers anarray of helpful tips and suggestions to make life easier forthe carer and more enjoyable and stimulating for the personwith dementia. At Home with Dementia suggests that carersencourage people with dementia to maintain the skills asso-ciated with food, such as shopping and meal preparation, foras long as possible. This provides a sense of inclusion for theperson and recalls what is a lifetime experience, often a mostenjoyable one. Eating and drinking can be promoted by‘modelling’ whereby the carer or another family member eatsat the table with the person, making it an enjoyable socialexperience. But far more than that needs to be done; thereare an array of policy initiatives that can improve nutritionfor those being cared for at home.

POLICY INITIATIVES

First and foremost, and always, better information isrequired; information about caring for someone withdementia, which of course includes nutrition and care in thehome. We need to strengthen the bridge between serviceproviders and people living with dementia. Informationabout all available services for those living with dementiashould be accessible and transparent so that consumers canexercise their right to choose and tailor their service deliveryin accordance to their particular needs. Carers need to knowof Meals on Wheels services and other advisory services thatcan give practical, helpful information about nutrition. Formany these are difficult lessons to learn.

This is especially so for those from culturally and linguis-tically diverse (CALD) communities, as cultural and lan-guage barriers are often a barrier to accessing services. Onein five older Australians was born overseas. Many age athome and those with dementia often revert to their mothertongue, making communication difficult. ‘What would youlike for dinner, Mum?’ can become a most challenging ques-tion for a CALD community member, over 80 years, withdementia. On the positive side, it is clear that CALDcommunities place a high value on food and the socialaspects of eating. For example, the French apparently spend60 minutes more per day at meal time than Australians!Interestingly, when I visited there last year I hardly saw anobese French man or woman. Another special group in needare people with dementia living in regional and rural areas.

What policies do we need?

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Social isolation can impinge on the nutritional well-being ofthe person with dementia and the carer. This is due tolimited transport options and the availability of services,such as Meals on Wheels.

A second area for policy development should be increasedfunding and assistance for support groups for carers. Recentresearch, conducted at Alzheimer’s Australia NSW,6 hasshown the value of these groups for giving the carers skillsand information to help them cope at home. Research sug-gests that attendance at these groups by carers can mean thatthe person with dementia will stay at home longer. Leadersand guest speakers at these groups speak on nutrition andhydration and members share tips for coping at home andwith meals. If someone outside his sons and daughters hadtold my father to broaden the menu beyond quiche he mayhave listened.

Next is the need for more training of formal and informalcarers about the specific nature of dementia care that per-tains to nutrition. Training can include using the senses toarouse an appetite in those people with dementia who arenot interested in eating. Using cooking smells, such as baconand onion, allowing the person with dementia to eat withtheir fingers and the provision of a calm environment foreating are worthwhile tips that can be taught. People livingwith dementia may need to be fed by a carer to get thenutrition they need. This is often a difficult step for a lovedone to take. Carers need to be helped with that decision sothat it happens as smoothly as possible.

Dental hygiene is a significant issue in nutrition as gumdisease and bad dental hygiene, common in older citizens,can result in discomfort when eating and so reduce nutri-tional intake. Helping carers with these very personal chal-lenges is essential.

In discussing policy initiatives regarding dementia, im-provements in respite must always be raised. Time and timeagain, in our conversations with carers, access to respite is oneof their greatest concerns. The reality is that as our populationages and people with dementia live at home longer, they willoften be cared for by an ageing carer and the need for adequaterespite will increase dramatically. Respite time allows the carerto have a break, to maintain their sense of identity and healthand hopefully meet their own nutritional and social needs sothat they can continue to be effective carers.

Next, we must also provide more support to GPs to enablethem to better support our ageing citizens. On the wholeGPs are overworked, time-poor, caring professionals. Theyneed simple, efficient methods of testing for dementia, withincreased remuneration via Medicare. Earlier diagnosis andlinks to nutritional advice will ensure better outcomes forthose with dementia. GPs also need simple methods of infor-mation delivery about dementia and related services that canbe easily distributed to their patients immediately after adiagnosis of dementia. Too often these patients are sent awayand told to come back for a reassessment in several monthstime. Diagnosis is the time that nutritional advice needs tostart and doctors need support in providing that advice.

Further, we also need to review the Aged Care Assessmentsystem. Traditionally, this system covered a broad range of

gerontological needs providing important service links forpeople ageing at home. However, with the growing incidenceof dementia these teams are increasingly required to servicethe specialist area of dementia care as well as the remainingageing population. Effectively, many are becoming DementiaAssessment Teams and they have not been sufficientlyresourced for the challenge they face. For example, we haveseen a very small increase in the number of dieticians workingwith people ageing at home, but not nearly the numbers wewill need to resource this emerging group.

One of the most important policy initiatives to explore is acommunity education and awareness campaign to reduce thestigma relating to dementia. Alzheimer’s Australia NSWresearch has found that the perceived stigma felt by peopleliving with dementia is a major barrier to accessing servicesthat give the person with dementia the opportunity to beinvolved in their future care plan and make arrangements thatwill allow them to stay at home longer.6 Reducing the stigmaof dementia in the community would also enable carers toassist the person with dementia to accommodate their nutri-tional needs by more easily visiting a cafe or a coffee shop fora meal or even just a hot chocolate. Carers have reported thatthe person they care for is often happy to sit in an environ-ment such as a garden or commercial nursery coffee shop,have a bite to eat and watch the crowd go by, but too oftencarers feel disinclined to do this because of the stigma thatattaches to this disease. They do not wish to put themselvesor the person they care for into an environment where theyfeel unwelcome and uncomfortable.

Finally perhaps we need to consider more assistance tomale carers. Women make up 87% of carers at present, butthis will change. Women’s participation in the workforce andchanged family arrangements will require more input frommen in caring roles. Men will need to be given more oppor-tunity and support to care for a loved one with dementia.Some of that assistance surely should be training our caringmen in nutrition so that my mother’s experience can beavoided. That training cannot of course be restricted to men,but they have unique needs.

Clearly there are a number of policy initiatives that couldbe undertaken to improve the quality of nutritional care forthose with dementia. It’s pretty clear really. We are socialbeings and nutrition is at the heart of that. Better nutrition inolder years will mean better outcomes all round. Practicaldeliverable policy initiatives will help people living withdementia and all ageing Australians to extend their lives andenable more fulfilling lives. We need to get on with it!

REFERENCES

1 Access Economics. Making choices, future dementia care: pro-jections, problems and preferences. Report by Access EconomicsPty Ltd for Alzheimer’s Australia NSW: Canberra, 2009.

2 Alzheimer’s Australia NSW. Statistics & dementia facts at aglance. Alzheimer’s Australia NSW website, 2008. (Availablefrom: http://www.alzheimers.org.au/upload/StatisticsMar08.pdfaccessed 19 May 2009).

3 Australian Bureau of Statistics & 3303.0 Causes of Death, Aus-tralia, 2007. ABS website. (Available from:http://www.abs.gov.au/

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ausstats/abs@.nsf/mediareleasesbytitle/63AFD409CBAA7592CA25757C00272CF2?OpenDocumentaccessed 26 May 2009).

4 Valenzuela M. It’s Never Too Late to Change Your Mind: the LatestMedical Thinking on What You Can Do to Avoid Dementia. Sydney:ABC Books, 2009.

5 NSW Office for Ageing. At Home with Dementia. Sydney:NSW Department of Ageing Disability and Home Care, 2008.

(Available from: http://www.dadhc.nsw.gov.au/NR/rdonlyres/E38724C5-74FB-4768-AD4B-9AFD1F39D53/4024/AtHomeDementia_Manual.pdf accessed 19 May 2009).

6 Brown J. Quality Support Groups Research Project: A Report onDementia Support Groups in New South Wales Phase III. Sydney:Alzheimer’s Australia NSW, 2009.

What policies do we need?

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