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As a member of Dementia NI, you will have the opportunity to attend your local Empower and Support Group. These groups provide a place where people living with dementia are able to come together on a regular basis to offer each other friendship and support. This is usually shared over a cup of tea or coffee and a nice bun or scone.

Empower and Support groups are usually held once a fortnight for approximately two hours in a relaxed informal environment. During the group there will always be a member of Dementia NI staff and volunteers on hand to support you. We regularly host visitors who may ask for your opinions and experiences on topics related to living with dementia.

Your level of participation will be within your personal boundaries and comfort. Dementia NI members report an improved level of confidence and skills development through attending the groups. Ultimately, we want you to feel comfortable and at ease and empowered.

As a member of Dementia NI, you are not compelled or required to attend a group. We have many opportunities for people living with dementia to get involved and host a range of activities to help enable peer support such as quilt making, online Yoga sessions, and Walking rugby.

We regularly attend events where people with dementia are given the opportunity to talk about their daily life to members of the public. This could be at exhibitions in shopping centres, community spaces and schools or colleges. We also offer members the opportunity to help deliver awareness raising sessions to educate the public on dementia and what it is like to live with the symptoms.

There are also opportunities for those who do not feel that a group environment is for them. If being part of a group is not for you, you will still be able to voice your opinion on services, literature and other things being developed for people living with dementia. We can ensure information is sent to you to review and give feedback. It is paramount to Dementia NI that our members are at the heart and are fully involved in everything we do. You can choose to contribute to our Dementia NI Newsletter which is sent to members throughout Northern Ireland. All members are entitled to elect the Board of Directors at the annual AGM, but this can be done by proxy if you are unable to attend the meeting.

Dementia NI is a membership led organisation where all members have a diagnosis of dementia. Dementia NI membership is specifically for people living with dementia, we currently do not provide a service for families and carers. Individuals require confirmation from the Memory/Care services or their GP/Consultant that the provision offered by Dementia NI would be suitable for their needs. To make a referral, please download the Dementia NI Membership Referral Form here.

Dementia NI Awareness Sessions

Dementia NI deliver awareness raising workshops to organisations who wish to train their staff on dementia. These bespoke sessions last for around 1.5 - 2 hours depending on how interactive your group is. We will ask for a donation in return for the delivery of this workshop. We aim to always have someone living with dementia come along to help share their experience of what life is really like and to help the audience understand how the condition affects people.

To find out more, please visit Consulting, Engaging and Involving Members.

Dementia NI Real Lives Events

Periodically, Dementia NI hold our flagship ‘Real Lives Event.’ Dementia NI Real Lives Events have been running throughout Northern Ireland since October 2016. This is a unique event brought to life as Dementia NI members share real-life experiences of living with dementia to help explain what support they need, in the hope that everyone will become more understanding and accepting of the symptoms of dementia.

The Real Lives events are an opportunity for people to come together throughout Northern Ireland to learn from our members who live with dementia. These events challenge the stigma which often surrounds dementia, educates the audience on how to communicate better with people living with dementia and demonstrates to the community how, with the correct support and services, people can still live well after a diagnosis.

To find out, more please visit Real Lives Events.

We currently have many ways for you to get involved and help Dementia NI. We have various volunteering roles available.

If you would prefer not to volunteer there are still ways which you can help. You may wish to to raise funds for us. If this is something you would be interested in, we have a dedicated member of staff who can help you with any fundraising ideas you may have. Please contact Dementia NI for further information.

You or the person you know may not have dementia; however, it is best to have this checked out to be able to access relevant support and medical intervention.

It is important to note that dementia is not a normal part of the ageing process. As we get older it is normal to forget things and misplace items however with dementia these symptoms can be much more prominent. For example, if you were to misplace your glasses, someone without dementia would find retracing their steps helpful, however someone who has dementia may find this very difficult to do.

If you are experiencing difficulties, then it is very important to visit your GP to discuss this. When you visit the GP, they will do a series of tests to rule out all other conditions which could have an impact on your memory or other areas of cognition.

If you are concerned that you may have symptoms of dementia, it is very important to contact your GP. You can then discuss the symptoms and he/she will carry out a test to assess your memory and other areas of your cognition. Based on the result of this test, your GP will determine whether it is necessary to make a referral to visit the local memory clinic. At the memory clinic more tests will be carried out and brain scans may be recommended.

There is a lot of support available to people affected by dementia, both from the NHS, local authorities and from the community and voluntary sector. These may include dementia navigator services, support groups, befriending, advocacy, and many other forms of support which help you maintain your independence and decrease social isolation. No one should have to go through this journey alone and social interaction is vital in maintaining a healthy life and living well with dementia. Please visit our Living with Dementia section for more information about dementia and on where to find help and support.

It is important if a family member or friend has been diagnosed with dementia that you too get the relevant support and information to help you. Getting the right information at the right time will make the dementia journey easier for both you and the person living with dementia. You do not have to undertake this journey alone and there are so many services available to help you which in turn can help the person with dementia. Your local Dementia Navigator is best place to start to get the relevant information and advice. You can also contact your Social Worker or CPN (Community Psychiatric Nurse) when you need extra support. They can support you with things like home care packages, respite care and referrals for additional support such as day care etc.

As someone who supports or cares for a person living with dementia it is important that you get on the carers register – you can do this through your GP. It is important to be registered so that the medical professionals and clinicians can also support you at appointments.

There are many carer support groups across Northern Ireland and most health trusts will have a Carers Co-ordinator who you can contact to find out what is happening for you locally, what groups are running and how you can get support.

Organisations such as Tide and the Alzheimer’s Society also run carers support groups on a regular basis. Being able to socialise and meet other people who understand is very important, it is equally as important that you too get a short break from your caring responsibilities. Please visit our Living with Dementia section for more information about dementia and on where to find help and support.

As we grow older it is important to safeguard our belongings and for our wishes to be documented, most people do this by creating a Will. However, there are many other considerations which should be noted that are equally as important especially if someone is currently being tested for or has been diagnosed with dementia. Most people will have heard of a Will, which outlines what happens to our estate after our death but people living with a condition such as dementia should think about making their wishes clear in terms of decisions about how they would like to live should they lose the ability to make decisions for themselves.

For further information please visit: https://www.nidirect.gov.uk/articles/managing-your-affairs-and-enduring-power-attorney

Please visit our Living with Dementia section for more information about dementia and on where to find help and support.

Choices - Legal, financial, housing, end of life – When it comes down to it, we would all like to have say over our future. The same can be said for our finances and who manages those. Each person over the age of 18 should consider creating an Enduring Power of Attorney. However, when a person is diagnosed with dementia this becomes even more important as it means you will have a say over who manages your finances when you are no longer able to do so. That is a very important decision, but it also means you are in control.

Enduring Power of Attorney – What is it?

An Enduring Power of Attorney is a legal document which states who you would like to manage your property and finances if you are unable to do so. You can also choose how much or little power to grant to a number of individuals. It is a 4-page document you complete with your solicitor; you need to identify 2 or more nominees to manage your finances if you are no longer able to do so. When you create this document, you can lodge it with your Solicitor until you need it. However, when a person has dementia it is advisable that they register this with the court system immediately. Once registered the court will stamp and send back a certificate which you can then present to all your financial organisations to make them aware of your arrangements. Unfortunately, it can be a little more complicated to organise this after a dementia diagnosis and the solicitor may request that you have a “Mental capacity assessment” carried out with a Psychiatrist. This is to ensure that you have sufficient mental capacity to create this document and that you fully understand what it means.

This is the link to the 4-page document which you can download and fill and bring to your solicitor.

Visit: https://www.justice-ni.gov.uk/articles/information-enduring-powers-attorney-epa

A control order will be required if you are deemed incapable of creating an Enduring Power of Attorney, this means that the court will nominate someone to manage your financial affairs on your behalf. Unlike an enduring Power of Attorney, if you are the person named in the control order, you must keep receipts for all purchases made on behalf of the person deemed incapacitated. Permission to spend more than £500 in one transaction, will be required. The courts will tend to make decisions that are in the best interests of the person with dementia. All the above are ways to safeguard your finances if you have dementia.

Visit: https://www.justice-ni.gov.uk/articles/how-apply-become-controller

Wills - Making and changing wills can be different after a diagnosis of dementia. It is extremely important that if you wish to change your will to contact your solicitor as soon as possible. It is very important that your will is up to date and prepared by an appropriate solicitor.

Appointees – When you are diagnosed with dementia it is also possible to assign someone to manage your benefits on your behalf. You can arrange this by contacting the local benefits office and arranging a meeting to assign someone as your appointee.

Visit: https://www.nidirect.gov.uk/articles/becoming-appointee-social-security-benefits

Third Party Mandates are a legal process for someone else to use your bank account. Forms can be picked up from the bank, completed and returned. However, this becomes null and void if a person has lost mental capacity.

Permanent Agent is a legal process for someone else to access your post office account. Forms can be picked up from the post office, completed and returned. However, this becomes null and void if a person has lost mental capacity.

Financial Assessments – If at some stage you need move out of your home and into nursing or residential care, your social worker will carry out a financial assessment to determine what your entitlements are to support the care you will need. It is important to understand this process and the challenges around joint bank accounts when making these decisions. For example, some care homes will require top up fees in addition to any costs covered by the government and/or benefits, it is best to find all this out before making your final decisions.

Living Wills – It is important to always have a choice in your future. For example, in the unfortunate event that you need to be resuscitated or have artificial ventilation, there is a way to ensure your wishes are carried out legally. This can be done through the creation of a living will, sometimes also known as an advanced care plan, which you can set up in consultation with your GP. It is also possible to create a care plan with your family, however this is not considered a living will and is therefore not legally binding.

Housing options – There are many different accommodation options available across Northern Ireland which will enable you to live independently for longer. These are purpose built supported housing schemes which are specifically designed for people with dementia and their families. You can move into your own self-contained accommodation with your family and pets. The benefit of living in supporting housing is the security of knowing there is always someone on hand for support if needed.

There are also places like sheltered housing, assisted living houses and self-contained flats, these vary in availability across Northern Ireland, but it is very important to know that there are options if you choose to move out of your own home.

There are also nursing and residential options if this is your wish. However, if you wish to remain at home for as long as you can, it is important that you make your wishes known to your social worker and other relevant care providers.

End of Life care – Dying well is an extremely important part of all our lives. It is important that your wishes and views are listened to. Consider making your wishes clear to your family or health professionals particularly if you have a preference to remain at home, stay in hospital or if your preference is to go to a hospice.

If you are unhappy or have concerns in relation to the care your family member or loved one is receiving either at home or in a care facility you can speak to The Regulation and Quality Improvement Authority (RQIA). The RQIA is the independent body responsible for monitoring and inspecting the availability and the quality of health and social care services in Northern Ireland and encouraging improvements in the quality of those services. For more information on how the RQIA can help please visit: https://www.rqia.org.uk/RQIA/media/RQIA/Resources/About-RQIA-Booklet.pdf

You can also receive support and guidance from the Patient and Client Council (PCC). Their role is to role is to be an independent, informed, and influential voice that makes a positive difference and advocates for people across Northern Ireland in Health and Social Care. For more information on how the Patient and Client Council can help please visit: https://patientclientcouncil.hscni.net/