OUR HELP AND ACTIVITIES NEAR YOU BY YOUR SIDE FACING DEMENTIA HELPING YOU TO GET THE MOST OUT OF LIFE CONTENTS Dementia - The facts in numbers .......................................................... 4 Foreword ......................................................................................................... 5 Preconceptions are hard to change ...................................................... 6 Sure sign of the illness ............................................................................... 7 Association France Alzheimer: Our values ...................................... 8 Don’t try and face the illness on your own ..................................... 9 Association France Alzheimer: A range of activities ................... 10 For carers ......................................................................................................... 11 For those with dementia .......................................................................... 13 For those with dementia and their carers ........................................ 15 Where to find our support listing of local association ............... 18 An important note for English speaking readers: in France the term dementia is considered pejorative and to some shocking. These days English speakers use the term freely without any perceived problems. One might say that using the term dementia in France is akin to saying someone is a lunatic in English. So, when in this document the terms “la Maladie Alzheimer et les Maladies Apparentées” or translated “Alzheimer’s disease and related diseases”, this means dementia. Alzheimer’s disease is one of a number of types of dementia as are, for instance, Vascular Dementia and Dementia with Lowy Bodies. These other forms of dementia are also described later in this booklet in the section “Related Illnesses”. 2 3 BY YOUR SIDE FIGHTING DEMENTIA DEMENTIA 900 000 THE FACTS diagnosed with dementia with 60 % of those living IN NUMBERS in their own homes More than 1 in 4 people in France over 65 will 2 000 000 be affected by dementia carers are caring for a by 2020 relative with dementia FOREWORD 9 out of 10 French people think last 30 years. Thanks to its network ASSOCIATION 97 local associations that Alzheimer’s is a priority for of departmental associations, local with over 200 offices society today. How could it be contacts and the backbone of its FRANCE otherwise when they see or have seen volunteers and professionals, the ALZHEIMER the consequences of the illness on Association has been able to create the lives of someone near to them; a wide range of practical support IN ACTION ! a neighbour, a colleague or a friend? and the capacity to answer questions The reality is, the illness can affect from those with the dementia and everyone. their carers, and from professionals in medical and social work. Another reality: a person facing the challenges of life with dementia needs As you will see from reading this 2 200 The largest not only human resources, but also brochure families are not alone in volunteers private supporter of practical, material help, meeting facing the disease. You may realise supporting research in France places to provide support and sharing that an active life is still possible with people affected by dementia and time for respite. In other words this illness, but it does need to be with through more than this reality needs a response where support, guidance and information. 1200 everyone has a role to play in showing groups, workshops, etc. and reminding vulnerable families that These are the aims of this brochure and they are not alone. of the departmental associations of France Alzheimer, because the whole Association France Alzheimer has family of a person with dementia been championing this cause for the needs help. 4 5 BY YOUR SIDE FIGHTING DEMENTIA PRECONCEPTIONS ARE HARD SURE SIGNS OF THE ILLNESS TO CHANGE Alzheimer’s disease is a natural capacities of someone with dementia consequence of ageing and improve their quality of life. FALSE It’s true that the incidence of the disease increases with age, but it Dementia costs a family dearly can also affect people younger than TRUE Dementia is an expensive 60 years of age. It is an abnormal condition. It is classified as a chronic degeneration of the neurones of which disease (ALD 15 in France) and the the first signs appear on average at person with the disease receives 100% around the age of 70 years. reimbursements for their medical care from the French state. However, Dementia is hereditary 74% of the costs linked to the disease FALSE Fewer than 1% of cases of are related to care (not cure) and are dementia are believed to be hereditary. therefore not covered by French social Losing track of time, frequent mood problems at some stage of their life These hereditary forms of the disease security. changes, forgetting recent events, without being affected by dementia. are linked to particular genetic problems recognising people... mutations. In order to help people cope with Several signs may flag up the onset Which is why, when in doubt, consult Alzheimer’s disease it is useful to start of dementia. Association France your regular doctor. They will put We cannot treat dementia with some preconceptions which Alzheimer offers a checklist of ten signs you in contact , if necessary, with the FALSE There isn’t a cure for dementia colour our notions of dementia. that should alert families. nearest local specialist memory clinic at present, but there are drug or a specialist memory research centre treatments which may help alleviate But also it should be noted that that (CMRR). the symptoms. There are also non- anyone can experience these sorts of medical treatments that can sustain the CHECKLIST: 10 SIGNS WHICH HELP DETECT THE DISEASE • Loss of memory • Losing things forgetting recent events • Changes in ability to make • Difficulties in carrying out daily tasks judgements problems preparing a meal, winter clothes worn in summer, shopping... excessive spending... • Language problems • Changes in behaviour anxiety, iritability, agitation… • Disorientation with time and environment • Loss of motivation • Problems with abstract reasoning • Change in personality difficulties doing paperwork, jealousy, obsessive prejudice, managing, finances, writing a cheque excessive exuberance... 6 7 BY YOUR SIDE FIGHTING DEMENTIA ASSOCIATION FRANCE ALZHEIMER: DON’T TRY AND FACE THE ILLNESS OUR VALUES ON YOUR OWN Close to you and free paper media, newsletters) and events Faced with the isolation that the AN ESSENTIAL SUPPORT Our help and support is available to (Rencontres France Alzheimer or World illness creates for the sufferer and their everyone and anyone regardless of Alzheimer Day) help raise awareness of carer, families can rely on help from Everywhere in France volunteers of their financial and personal situation. the illness for families affected as well trained local volunteers. It’s essential to Association France Alzheimer devote as for the general public and local and benefit from the experience an expert their time and energy to share their Respect and dignity national authorities. assistance from these individuals. The experience and expertise to the Association France Alzheimer places majority of them have experienced or benefit of those with dementia, their the wellbeing of the person at the Training professionals, currently experience the same situation families and friends. heart of its activities and policies, carers and volunteers as your own. The volunteers are promoting tolerance, respect and Alzheimer’s disease and other forms of capable of assisting and advising you Greeting, listening, giving practical wellbeing. To achieve this we take into dementia requires special training and on a daily basis, and in this case, are courses, fundraising, administration consideration individuals’ and families’ knowledge for professionals in order accompanied by professionals. and communication... each brings their particular needs. to provide specific care for people with own particular interests and set of skills. the disease. Solidarity OUR 5 RECOMMENDATIONS One thing is certain: everyone has a The Association seeks to challenge Supporting research role to play when faced with the illness. the attitudes of society to promote a Association France Alzheimer • Do not remain alone better and more caring understanding donates more than any other private For more information: of dementia... organisation in France, giving more • Do not wait until you are exhausted www.francealzheimer.org than a million euros each year to support projects in medical, human • Don’t hesitate to contact your local and social sciences. France Alzheimer association OUR MISSION • Speak to your family about your situation Supporting families To enable people suffering the illness • Find out about the different types and their carers cope better with the of support available illness, there are several initiatives to accompany and support them : Cafés Mémoire© (a rendez-vous for meeting and receiving usefull information), Haltes Relais© (activities for both carers and people suffering the illness) Groupe de paroles (group therapy). Informing and raising awarness We offer information and guidance (website, social networks, publications, VOLUNTEER HELP - 8 9 BY YOUR SIDE FIGHTING DEMENTIA ASSOCIATION FRANCE ALZHEIMER: A RANGE OF SPECIAL ACTIVITIES France Alzheimer offers helpers and sufferers a whole series of solutions to fulfill their specific needs. This can be implemented by the