Léim ar aghaidh chuig an bpríomhábhar

Seanad Éireann díospóireacht -
Thursday, 17 May 1990

Vol. 124 No. 19

Adjournment Matter. - Alzheimer's Disease.

Cuirim fáilte roimh an Aire. Ba mhaith liom labhairt inniu ar ghalar speisialta, galar uafásach. Is galar é nach bhfuil mórán eolais faoi sa tír agus, ag an am céanna, tá sé ag déanamh andochair agus an-scriosta agus is rud antruamhéileach é. Is galar é gur beag cainte atá déanta faoi. Tá mé ag ceapadh sna laethanta atá anois ann go bhfuil seans ann rud éigin a dhéanamh faoin ghalar uafásach ar a dtugtar Alzheimer's Disease.

This disease was discovered in 1908 by Dr. Alzheimer agus aisteach go leor it is a disease that could only be diagnosed on an autopsy. There is no way of finding the disease but by a series of eliminations in regard to patients' symptoms; sa tslí sin tá tú in ann an galar seo a aithint.

Tá go leor leor airgid caite ag daoine príobháideacha. Private institutions and private people who are interested in this disease down through the years have spent an enormous amount of money to try to find the causes of Alzheimers. Go dtí an lá atá inniu ann níl a fhios acu cinnte, ach by the process of elimination bíonn siad in ann teacht ar an chúis. Meastar anois sa tír seo go bhfuil idir 20,000 agus 30,000 duine go bhfuil galar Alzheimer orthu. If there are between 20,000 and 30,000 people suffering from Alzheimers Disease there must be added to the list 20,000 to 30,000 carers who have to look after those people.

Is aisteach an rud é ach ar fud an domhain níl an t-uafás eolais faoi. An chéad rud a tharlaíonn san Alzheimer's Disease ná go gcliseann ar an inchinn, brain failure, mar a thugtar air i mBéarla. Ní dochtúir mise, níl aon bhaint agam le leigheas, ach an fáth gur chuir mé suim sa scéal seo ó thús ná gur tháining mé trasna ar dhaoine atá ag fulaingt an ghalair uafásaigh seo. Strangely enough, my pity is turned more towards the carer than the sufferer, because it is a disease the sufferer is not aware of go bunúsach, ach an duine atá ag tabhairt aire don té atá tinn, he is aware of it daily and nightly year in and year out. One of the first symptoms of the disease is loss of personality. Cailleann daoine lúth na gcos, níl siad in ann aire a thabhairt dóibh féin ó thaobh chúrsaí leithris de. They fail to recognise people. Ag deireadh thiar, ní bhíonn acu ach cúpla focal. They lose their speech. It is described by many people as a living death, bás ina bheatha.

Tá iarrachtaí á ndéanamh ar fud na tíre gníomh éigin a dhéanamh faoi seo. Tá an Alzheimer's Society of Ireland bunaithe ó 1984 mar chomhlacht carthanachta, a friendly society. Is iad na haidhmeanna atá ag an gcumann seo ná cúnamh a thabhairt do dhaoine a bhfuil an galar seo orthu.

I would like especially to make representations on behalf of the Alzheimers Society who want to be recognised as a legitimate body in the health services. Basically, they are involved in providing comfort and alleviation of pain and stress both to the sufferers and the carers. Tá mé ag iarraidh ar Bhord Sláinte an Iarthair, the Western Health Board, in which I have an interest and all health boards to take this into consideration and look after Alzheimers sufferers in a more specific way. Mar a dúirt mé cheana, the greatest stress is to the carers of victims, because the victims are generally unaware of their sufferings, but the carers are. The carers see the people they look after, usually relations or friends losing all sense of time and place. Alzheimers Disease can last from two to 20 years. The carers see the mental faculties of the sufferers deteriorating year after year and day after day until many of those patients become just like vegetables. To all intents and purposes, as far as the carers are concerned, they have a bereavement on their hands long before a clinical death takes place.

I put forward this motion to ask the Minister for Health to approve new structures so that amendment of the Health Act can take place to enable Alzheimers sufferers and their carers to be properly looked after. Tá sé ráite go bhfuil 7 faoin gcéad de na daoine atá os cionn 65 bliana d'aois, 7 per cent of the over 65s, and 20 per cent of the over 80s, suffer from one form or other of dementia, and 75 per cent of dementia cases are Alzheimers sufferers. Tá obair á déanamh agus tá a fhios agam go bhfuil an tAire Sláinte, an Teachta O'Hanlon, báúil don Alzheimer's Society agus gur mhaith leis cúnamh a thabhairt ar bhealach amháin nó ar bhealach eile. Tá gníomhartha áirithe go bhféadfadh an Stát a dhéanamh agus tá sé thar am don Stát iad a dhéanamh. Tá deacracht ann go dtí seo.

There is no special category in the Health Act, 1970 which recognises an Alzheimers sufferer. They are recognised either as a psychiatric patient. Má théann tú siar go Gaillimh, as you go to Béal Átha na Slua, which is a mental institution, you will find many Alzheimer's patients. That is not where they should be sent. There should be proper institutional and special care provided for Alzheimer's sufferers. There is general goodwill and heartfelt feeling to do something about this problem. At a recent meeting with some Western Health Board officials I was told they intend in the long term, setting up a programme for Alzheimer's sufferers. That is a welcome advancement as far as the Western Health Board are concerned. I would like to think that their example will be followed in all health boards and I ask the Minister to ensure that such a movement takes place as soon as possible. We must, first of all, recognise the disease and, secondly, ensure that a short-term respite centre is provided.

I know a young man from Connemara who got Alzheimer's Disease at 48 years of age. He is now completely immobile and his wife has looked after him day and night for the last seven years. Seeing how that woman cared for her husband at home spurred me on to do something to enable her, for example, to have a respite centre where she could leave her husband for three or four days so that she could have a break. The health boards do not provide such care at present. Tá sé fíorthábhachtach that we would recognise that.

The Alzheimer's Society have broken new ground in Temple Hill, Blackrock in south Dublin. The Daughters of Charity have put at the disposal of the Alzheimer's Society a building which they have converted into a day centre and a respite centre. This centre can accommodate 20 Alzheimer's patients who have been assessed. That is all done on a voluntary basis. It is not done under the Eastern Health Board but by the Alzheimer's Society. It is the only centre in the whole of Dublin to serve a population of one million people. If we take the statistics where 7 per cent of the over 65s and 20 per cent of the over 80s are suffering from Alzheimers disease there must be many Alzheimer's sufferers in Dublin city who will never receive any day care and many carers who will never have any respite. Therefore it is important that the Department of Health address this problem.

On a recent visit to the day centre in Temple Hill I was delighted and amazed to see the work that is being carried out there on a voluntary basis, without any State funding. I would like to see that continued on a voluntary basis but the State should ensure that those voluntary efforts are sustained in years to come. It was a revelation to see the way those people are looked after in the centre. There is no reason for not having at least one — to start with — day centre and respite centre like that in every health board area. In the Western Health Board area I would like to see such centres set up in Castlebar, Roscommon and Galway city. We are working towards that and we hope to have one available by October next with the help of the Western Health Board, who have been very co-operative and are willng to help us to get started.

The Department of Health should become more involved and made more aware of the type and number of sufferers involved, and help should be forthcoming, do na daoine bochta seo, agus níl mé ag caint faoin bhfocal "bocht" sa chiall a thuigimidne "bocht". It is an extraordinary disease. It is not part of the Health Act. It is a disease like brain or heart failure or any other failure in the body. It has not been recognised as such by the State. When I say "recognised" I do not say that they have not admitted that such a thing exists, but helping the carers and the provision of space for the sufferers is not on the agenda of any health board. Níor mhaith liomsa níos mó a rá faoi mar ba mhaith le mo chara anseo, an Seanadóir O'Reilly, cúpla focal a rá faoi. He would like to say a few words.

The Senator should have indicated that to me at the beginning.

Acting Chairman

You know the Standing Order. You have 20 minutes and I must call the Minister after you have spoken for 20 minutes.

Is the 20 minutes finished?

Acting Chairman

No, but there are only a few minutes left and there are Senators even on the other side. At this stage I would have to call some Senator on the other side of the House.

Maith go leor. I did not understand.

Acting Chairman

If you had indicated it at the beginning we could have got agreement. In the absence of agreement at the beginning I am obliged to call some Senator from the other side of the House. Strictly speaking, I should call the Minister but I want to be as fair as possible.

Would you agree to call a speaker from the other side and give each of us one minute each?

Acting Chairman

If the Seanad is agreeable to that? Agreed.

Go raibh maith agat. I am sorry. Níor thuig mé faoi sin.

Ba mhaith liom cúpla focail a rá faoin tinneas olc seo. It is indeed an extremely debilitating and sad form of disease. It is basically a form of premature senility. It is very difficult, as Senator Ó Foighil has indicated, to specifically diagnose it clinically and the actual person who is suffering from the disease may well not recognise it himself. It is the family who in many ways suffer the full trauma of it — in more senses than one since it is effectively a deterioration of the working of the brain and if the person concerned is the breadwinner of the family he may well have done very considerable damage to his business or whatever it may have been before the condition is fully recognised.

I would like to join in the tribute to the work that is going on in Blackrock and to say that I think the health boards are beginning to take this on board. It is a very unusual disease as regards where it fits in, and indeed the Department of Health are recognising this disease. Although, as the Senator said, it was originally described in 1908 by Dr. Alzheimer, it is only really in the last ten or 15 years that its clinical prevalence has been fully recognised. There is some considerable degree of indication now that metallica changes in the brain associated with neuro transmitters in brain connections or synapsis may possibly be the source of this disease. That does give us some hope.

Cuirim fáilte roimh an Aire go dtí an Teach seo agus déanaim comhgairdeas don Teachta Ó Foighil ar son an rúin seo agus an chaoi inar phléigh sé é. Tá sé iontach tábhachtach.

Very briefly, I would like to make one or two points about this issue as health spokesperson in the Seanad for our party. It is a welcome discussion. I think that under the umbrella of health care we will have to, over the next coming years, focus specifically on things like Alzheimer's, multiple sclerosis — all of these specialist areas of disease. often these matters can be lost sight of. Alzheimer's is a particularly horrific disease. I do not propose, under the constraints that you correctly have put on discussion at this stage, Sir, to go back into describing the nature of the disease nor do I propose to elaborate on the difficulties it presents for people. I think it is clear to all.

I would just reiterate a couple of points very quickly. I appeal to the Minister to have day care centres established where possible and certainly to initiate a programme of day care centres to deal with the disease. I also appeal to the Minister to do something very simple, easy and cost-free: to get all health boards to recognise the disease by having cases of Alzheimer's listed under the 1970 Health Act. It is my understanding — and the Minister can correct me if I am wrong — that this is done at the moment in relation to multiple sclerosis and other diseases and not done in relation to Alzheimer's.

Secondly, I go along with Senator Ó Foighil in relation to making some special provision for the carers because it must be a horrific thing for the carers to live with. I thank the Acting Chairman for his indulgence, given the important nature of the issue under discussion. I hope the Minister will see fit to come with us some of the way.

Is main liom ar dtús mo bhuíochas a ghabháil leis an Seanadóir ó Foighil as ucht tús a chur leis an díospóireacht seo sa Seanad. Léirigh sí an tsuim atá ag gach éinne san ábhar aisteach, deacair atá ann.

I also thank all the Members who contributed to this short debate on a very sensitive and difficult matter and for the sense of fair play with which they approached the subject. Sometimes debates on health matters tend to be too party political, almost as if nothing had ever happened or no difficulty had ever arisen until the present, and that now it is being ignored. On that basis, the Seanad, in the way that we handle matters like this, has an enormous contribution to make. The whole country will benefit from that wider and broader approach whereby we can collectively work together to find solutions.

The Minister for Health, and indeed all of us, are very conscious of the need for the provision of appropriate services for those suffering from Alzheimer's disease. As you are probably aware, this condition does not fall neatly within the parameters of any one service and, as a result, the primary care services, the specialist psychiatric services and services for the elderly all have a role in the provision of a comprehensive service for the treatment and care of people with Alzheimer's disease.

Developments in the psychiatric services are proceeding in line with the recommendations contained in Planning for the Future and are moving towards a community based psychiatric service. This involves the provision of day care and crisis intervention services including community residential places for people who, for one reason or another, cannot continue to live at home. The new developments will bring the services closer to the people and the areas served. This will enable the psychiatric team to provide a degree of family support which has not been possible in the past. Persons suffering from Alzheimer's Disease, and their families, will benefit from these new services.

The report of the Working Group on the Elderly, The Years Ahead, also focuses on the development of community care services and recommends that the elderly, including these with dementia, should be supported in their own homes for as long as possible. The Years Ahead made specific recommendations regarding the care of the elderly mentally infirm. These included the establishment of day care facilities in each district, day hospitals in urban areas and the provision of welfare home accommodation for those who can no longer be supported at home.

This report further recommends that in each community care area one of the consultant psychiatrists attached to the area psychiatric service should have responsibility for the care of the elderly with severe dementia and that consultant psychiatrists with a special interest in the psychiatry of old age should be appointed in Dublin and in Cork. The Department of Health has requested each of the health boards to submit plans for the implementation of the report's recommendations, including those relating to the elderly with dementia.

Already comprehensive plans for the development of services for the elderly have been prepared by a number of health boards. These plans provide for the development of care teams in each community care area who will ensure that a comprehensive range of services are available locally. The provision of appropriate part-time nursing services in the community and in the Eastern Health Board, particularly the development of care assistants as part of the community team, are important elements of the plans. Additional day care facilities for the elderly are planned and in the Eastern Health Board there will also be places for the elderly mentally infirm and a small number of residential units for these patients. I might add that during 1988 two 32-bed units specifically designed for the elderly mentally infirm were opened at Vergemount Hospital, Clonskeagh, and plans are at an advanced stage for a further two such units at St. Clare's, Ballymun, and at Tivoli Road, Dun Laoghaire.

Also in Dublin, two psychogeriatric services are in operation. On the North side the service is based in James Connolly Memorial Hospital, with facilities including high support day care; at St. Vincent's Hospital, Fairview; and in James Connolly Memorial Hospital. Respite beds are also available in St. Vincent's Hospital, Fairview.

The catchment area for this service is community care areas 6 and 7. The south side service is based in St. James's Hospital and serves that catchment area. Both operate as community services, with emphasis on domiciliary assessment, in the management of dementia particularly. These new services are liaising closely with community care and general hospital care programmes and with other care providers, both statutory and voluntary, with the objective of pooling resources in providing the necessary support.

The Years Ahead also looked at the partnership between carers, volunteers and statutory agencies in caring for the dependent elderly at home, and made a number of important recommendations to assist family carers in looking after elderly relatives. It is encouraging to see that the plans prepared by the health boards to date emphasise community care and support for the family, particularly through home helps, home nursing, day care centres and respite care.

It is an established fact that between 60,000 and 70,000 old people are being kept at home by carers, many of whom are over 60 years of age themselves. The necessity to involve the voluntary agencies, the statutory agencies, in supporting the carers, and, as mentioned by Senator Ó Foighil, to getting some time off for them for a holiday or respite, is crucial to the future development of these services.

As evidence of the Government's commitment to develop services for the elderly £5 million was made available for these services in this year's budget: £2.5 million is going to strengthen home care services such as home nursing, home helps and to offer greater flexibility in these services with evening and weekend relief services; £2 million is being used to provide more community facilities such as day care centres and respite care, all of which provide support and relief for families. Additional respite beds are of great benefit to carers, giving them a chance to relax or an opportunity to go on holiday. The experience to date of respite beds in a number of hospitals underlines this point; and £0.5 million is going to provide additional subventions for places in nursing homes.

This initial investment of £5 million of which £3 million will come from the national lottery, in expanded health services for the elderly, demonstrates the Government's commitment to implementing the recommendations of The Years Ahead. It marks the beginning of a wider redeployment of resources towards the support of our older citizens. The concentration of support on home nursing, home helps and other community services points to our intention to put in place a good network of locally based support services which will help carers and families.

I would like to mention briefly another development which affects carers and that is the carers allowance, which is being introduced by my colleague, the Minister for Social Welfare. This new allowance, which replaces the prescribed relative's allowance, improves the financial independence of carers and it is a major step forward.

As you will be aware, the Alzheimer Society of Ireland is a particularly active and concerned voluntary group and, in recognition and support of the invaluable work being carried out by the Society, the Minister for Health was pleased to be able to provide grant aid from lottery funds to the society. The Eastern Health Board have also contributed towards the running by the society of a day care centre and respite care unit at Temple Hill, Blackrock. I understand that the society at present examining plans to establish another day care and respite centre on the north side of Dublin and that the Limerick branch of the society is also formulating a proposal for a day centre in that city.

In the course of discussions with the Alzheimer Society the need for the establishment of a clear policy on the management of pre-senile dementia has been highlighted. This issue will be given priority by the Department of Health in the context of a current review of the implementation of the report of the psychiatric services, Planning for the Future.

While some questions might be raised with regard to what category or area of health care these patients fit comfortably into, patients suffering from Alzheimer's disease have a whole range of community support services available to them. Planning of community care services has emphasised the need for co-ordination of service provision. It is the existence of a clear policy and plans for services in each community care area and the full and proper co-ordination and integration of all community-based services, particularly the psychiatric and geriatric services, that will ensure that a comprehensive and appropriate service is available to all those in need.

The Seanad adjourned at 4.45 p.m. until 2.30 p.m. on Wednesday, 23 May 1990.