If you, or a friend or relative, have been diagnosed with dementia, you may be feeling anxious or confused. You may not know what dementia is. This page tries to help answer some of your questions about dementia and provide more information about dementia and where you can get help.
Many of us fear we may have dementia, particularly if we think that our memory is getting worse or if we have known someone who has had the illness. Becoming forgetful does not necessarily mean that you have dementia. Memory loss can be an effect of ageing, and it can also be a sign of stress or depression.
If you are worried about yourself, or someone close to you, it is worth discussing your concerns with your GP.
You can get help 24 hours a day from the Welsh dementia Helpline 0808 808 2235. They provide a dedicated helpline and website offering emotional support and advice to anyone who has been diagnosed with dementia or for relatives and carers of people with dementia.
You can find out more about services that might be able to offer help to you and you family on our dementia links page.
You may be interested in reading more about people's experiences of dementia or perhaps you want to read and take part in the debates that surround this subject. You can get to our peoples stories and blogs page here.
Dementia describes a set of symptoms which include loss of memory, mood changes, and problems with communication and reasoning. Dementia occurs as a result of the death of brain cells or damage in parts of the brain that deal with our thought processes. There are different types of dementia with the most common being Alzheimer's disease and vascular dementia.
Dementia is not a natural stage in the ageing process but a progressive illness that tends to affect the individual in a gradual manner. However, there is considerable evidence that where people receive an early diagnosis and access to information, support and care, that they can often adapt to living well with dementia.
In 2011 there were just over 42,700 people living with dementia in Wales. The effect on the individual is different in each case.
Dementia UK have a page that answers the common questions about dementia and they also provide factsheets.
NHS Choices also provide information about understanding dementia.
Early diagnosis is a crucial part of coping with dementia. It is often the first step in getting treatment and care. Diagnosis can rule out other conditions that might be treatable, such as depression, and other causes of confusion. A diagnosis can also help a person get information, advice and support, and enable them and their family to plan for the future.
Diagnosing dementia is often difficult, particularly in the early stages. The GP is the first person to consult. They can assess you and can make a diagnosis. They may decide to refer you to a specialist. Most commonly, the specialist will be an older-age psychiatrist or perhaps a geriatrician. It could be a neurologist if you're under 65 years old.
Alzheimer's Society provide information and factsheets about diagnosis assessments.
NHS Choice also provide information about diagnosis and treatment
For nearly everyone with dementia the most important type of treatment is simply good support and care.
Person centred care
Person-centred care involves tailoring a person's care to their interests, abilities, history and personality. This helps them to take part in the things they enjoy and can be an effective way of preventing and managing behavioural and psychological symptoms of dementia. You can find out more on the Alzheimer's Society website here.
What does person centred dementia care look, sound and feel like? You can read an article by David Sheard here.
Social services can provide help, including aids and adaptations to the home, meals on wheels, home care, respite care, day care, and residential and nursing care. Some social services provide more help than others and you may have to pay for some of the services, depending on how much money you have. To find out more information about this you could contact the Welsh Dementia Helpline on 0808 808 2235 or Powys County Council on 0845 6027050.
There are a variety of drugs that can help the symptoms of Alzheimer's disease or slow the progression of the disease. You can find out more about these on Alzheimer's Society website here.
People with dementia often experience symptoms that affect their behaviour, causing aggression, agitation and psychotic symptoms like delusions and hallucinations. In some cases medication can help and people may be prescribed antipsychotic drugs. You can find out more about anti-psychotic medication on Alzheimer's Society website here.
Complementary and alternative treatments
You can read about the use of complementary and alternative treatments and the current evidence for their effectiveness at Alzheimer's Society here.
Recently work has taken place in Wales to identify the areas that need to be addressed to improve the lives of those with and affected by dementia. On the 16th February 2011 the National Dementia Vision for Wales was published. This provides a long-term vision to try to ensure that Wales can best meet the challenge of helping people living with dementia across the country.
Powys Dementia Plan 2016 - 19
Powys teaching Health Board, Powys County Council and PAVO have produced a joint action plan to strengthen support for people with dementia (including in younger adults with a learning disability) and for their carers.
You can read the Powys Dementia Plan 2016 - 19 here.
The action plan has 6 pledges, namely:
- To raise public awareness in relation to dementia, improving the lived experience.
- To reduce risk, ensure timely diagnosis and improve dementia diagnosis rate.
- To ensure appropriate post-diagnostic interventions are in place.
- To ensure people with dementia are treated with dignity and respect by staff who are skilled and competent.
- To improve the care of people with dementia in general hospital settings.
- Support care homes in Powys to deliver person-centred care for people with dementia.
PAVO's Senior Officer Health & Social Care represents the sector on dementia issues.
There is now a Powys Dementia Network in the county. You can find out more in a recent report here.
Dementia Matters in Powys
Dementia Matters in Powys is a newly-established charitable organisation that works in partnership with communities, third-sector and statutory organisations to develop and share innovative practice. Dementia Matters in Powys is committed to giving a voice to those living with dementia and doing things 'with' people rather than 'for' them. By working together in this way we will create communities that respect, value and empower individuals so that they are more able to face the challenges before them and can exercise more choice and control in their own lives.
Improving dementia care
This 1000 Lives Plus (Wales) guide has been produced to enable healthcare organisations and teams to implement changes to improve the safety and quality of care of their patients.
Good Work: A Dementia Learning and Development Framework for Wales
The Framework has been developed by the Care Council in partnership with NHS Wales. It is intended to support what matters most to the people of Wales, as well as the spirit and requirements of Welsh policy, legislation and guidance regarding the care, support and empowerment of people with dementia, carers, and the health and social care workforce. More here.
You can find out more about remaining independent, support networks, sharing your experience and legal and financial information from the Alzheimer's Society here.
Powys County Council Library Service has selected books specifically to support people with dementia, their carers, relatives and friends, and you can see the collection here. Most of the list contains clinically approved sources of information about the experience of dementia; but it also includes some books from the 'Pictures to Share' series, designed to be accessible and entertaining for people in mid to late stages of dementia - people can browse through the pictures and reminisce, and family and friends can share and remember with them. Books can be borrowed from any library.
Still Going Strong is the Mental Health Foundation's booklet for people who have been diagnosed with dementia, and explains some of the basic facts about dementia, gives ideas on where you can get practical and emotional help, offers advice on planning the future, and details some strategies which other people have used to cope with dementia.
The Mental Health Foundation has also produced a booklet called Running self-help groups in sheltered and extra care accommodation for people who live with dementia.
World Health Organisation (WHO) also provide information on living well with dementia.
Dementia Dog Project
The Dementia Dog Project has been set up as a pilot in Scotland to show that dogs can help people with dementia maintain their waking, sleeping and eating routine, remind them to take medication, improve confidence, keep them active and engaged with their local community, as well as providing a constant companion who will reassure when facing new and unfamiliar situations.
Alzheimer's Society provide information about many aspects of caring for a person with dementia. There is a factsheet and information about everyday care, relationships, unusual behaviour, coping with caring and care services on their website here.
Becoming a Carer Mental Health Foundation's booklet about looking after someone with dementia, explaining some basic facts about dementia and provides ideas on where you can get practical and emotional support.
Credu - Connecting Carers - formerly Powys Carers offer Carer Outreach Workers to provide specific help to carers. They also help run Carer support groups, focus groups, activities and they can provide one to one support, advice and information.
Carers UK campaigns for change on behalf of carers and provides information and advice to carers.
There are practical, achievable things you can do now which could reduce your chances of developing dementia or, at the very least, improve your general health and wellbeing.
Research has identified many risk factors associated with dementia. You can find at more at Alzheimer's Society website.
If you have any suggestions for how we might improve this page or if you have any other sources of information that you think we should make reference to then please do get in touch with us. Either call us on 01686 628300 or email jackie.newey(at)pavo.org.uk.