What to do if you're feeling low

Dementia is difficult to deal with, whether you live with the condition or support someone who does. Here are 5 things that can help if you're feeling low.

Dementia help - what to do

You may find it difficult to cope, or find yourself feeling desperate or low. But you don’t have to face this on your own.

Maybe you're somebody who likes to make plans or take action. Perhaps you like to think things through, or talk to somebody and explore your feelings. Or maybe you prefer to take your mind off your worries. There's no right or wrong way to react – your feelings are valid.

Remember that we are here to help and will support you when you need it. Here are some things to try if things are difficult.

5 things to try if you're feeling low

1. Talk to our Helpline

If you're unhappy, exhausted or feeling down, our National Dementia Helpline offers advice and support seven days a week.

It may be hard to share how you are feeling, more so if you are feeling angry, frustrated or guilty. Friends and family can struggle to offer the right kind of support if they do not understand what you are going through. But our helpline advisers have specialist knowledge to provide the tailored support you need, however you're feeling.

The helpline is available by phone, or you can contact us via email, social media or Live Online Advice instant messaging. We want you to feel comfortable telling us the best and the worst of what you're feeling. Don't bottle it up for fear of shocking or upsetting us – we are here for you.

Helpline hours are Monday to Wednesday (9am – 8pm), Thursday and Friday (9am – 5pm), Saturday and Sunday (10am – 4pm). Call us on 0300 222 1122. If you need emotional support or someone to talk to at any other time, you can also contact the Samaritans or Silverline, open 24/7.

2. Register with Talking Point

By registering with our online community, Talking Point, you can connect with other people in similar situations.

Taking Point has specific areas for carers and people living with different stages of dementia, as well as a members-only area for discussing difficult or sensitive topics.

As a Talking Point member, you can ask questions, and share your experiences with others who understand what you’re going through. If you're feeling low, talking to somebody who has been through a similar experience can be massively helpful.

Joining Talking Point is free and we are open 24 hours a day. All you need is an internet connection.

3. Find out what's on offer in your local area

As well as the immediate support available online and via telephone, you may also be interested in the services available in your local area.

Alzheimer's Society and other organisations provide a wide range of information, advice, activities and social groups to help people live well with dementia. Why not use our Dementia Connect tool to find out what's available in your local area?

Dementia help - what to do

4. Plan for the future

If you live with dementia or support somebody who does, you may find that you need practical as well as emotional support. Making plans for the future can be empowering and give you the confidence to tackle whatever comes your way.

Whatever the problem is, we have a wide range of publications and factsheets on our website to provide practical information and support. Whether it's managing your money, updating your will or making a Lasting Power of Attorney, it can be reassuring to plan for your future.

Remember, if you can't find the information you need or want to talk it through, you can always speak to one of our helpline advisers.

5. Join Dementia Research

Your input is vital to helping us understand dementia, contributing to better care, treatment and a future cure. That's why we need people living with dementia and their carers to Join Dementia Research.

By becoming one of over 30,000 Join Dementia Research volunteers you can help make a huge difference for those living with the condition now by taking part in studies. The studies listed on the service are wide-ranging, from clinical trials of new drugs to others such as surveys, questionnaires or activities which can help improve care or prevention. By registering you are under no obligation to take part, but will have the opportunity to find out about studies that may interest you.

To find out more or register your interest, visit the Join Dementia Research website or contact the National Dementia Helpline.

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I have been caring for my husband for 12 yrs but he was diagnosed only 3 yrs ago. He is aggressive & critical of everything l do, most days l feel l just don't want to go on. I'm no longer trying to get help from social services it's too difficult & his family don't care. So there's just me & l am tired. I got through 5 yrs of cancer but can't make headway with all the closed doors l get. Don't remember the last smile, hug or laugh.

Oh I feel for you so much, to give pointers on how to get your own time away, a minutes peace could all be useless if you've tried before, so I'm just here to say, I hear you, I feel you I send love & support with this message, please go on for yourself, someone and many of us are here & listening, screaming waiting for that moment of peace for ourselves and the ever evolving personalities of the changes that are coming.
Dependant on where you live, see your doctor or call the helpline, we have community nurses that come along to check on both of us, our community offer passes to groups, meetings, cinema, meals & outings for carers, but you'll need care for your husband in place with their support. Reach out, and it will be supplied, have faith. Thinking of you. Dorset Mum

Hi
My husband was diagnosed with Alzheimer's/dementia in 2014.
He recently was saying really nasty things to me and like you very critical. It is a horrendous illness it starts making you feel worthless my confidence has gone I no longer go out.
I feel a nuisance if I try and ask for help. My husband is 58.
I walk around on eggshells. His family don't want to know.

Hi Caroline,

I’m very sorry to hear about the difficult situation you are in at the moment and about the enormous impact that your husband’s behavioural symptoms is having on you.

It is really important to make the GP aware due to the risks to your own wellbeing. But it also sounds as though your husband’s dementia needs reviewing by a specialist doctor. You are definitely not being a nuisance to ask for help, and this is an important first step that you are taking.

A further source of support could be your local adult social care team (social services). As a carer you are entitled to support, especially given the amount of stress you are under. Use this link for finding the contact details your local team: https://www.gov.uk/apply-needs-assessment-social-services

There may also be local Alzheimer’s Society services nearby that can offer face-to-face help, advice and support. Details can be found at: www.alzheimers.org.uk/dementiaconnect

You may find it helpful to discuss this further with a helpline adviser on the Alzheimer’s Society’s National Dementia Helpline. In case this helps, the helpline is open 7 days a week to take calls on 0300 222 1122 (if you are able to call). Our helpline opening times are:

Monday - Wednesday 9am - 8pm
Thursday-Friday 9am-5pm
Saturday - Sunday: 10am - 4pm

You can also email the helpline: https://www.alzheimers.org.uk/forms/form/155/en/email_a_question_to_the….

The helpline’s Live Online Advice service is available Monday to Friday 9am – 12pm and 6pm-8pm. Click here for details: https://www.alzheimers.org.uk/info/20012/helpline/686/live_online_advice

You may also find it helpful to visit our online forum, Talking Point, where you can talk to other people online who may have experienced similar issues. I have included a link here: http://forum.alzheimers.org.uk/forum.php

I have also pasted links to a couple of our factsheets in case you find them useful:

Carers: looking after yourself - http://bit.ly/2lXyfYx
Changes in Behaviour - http://bit.ly/2smvaF4

Best wishes,

Pasha
Helpline Adviser
(National Dementia Helpline)

I am so sorry to hear that you’ve been struggling alone for so long and feel that there’s no help out there for you. It sounds as though you’ve become very isolated if you can’t remember your last smile, hug or laugh. We can offer you someone to talk to on our National Dementia Helpline on 0300 222 1122 – we can offer information and advice, but also just a listening ear when you feel like you need to let some of your feelings out.

I wonder if you’ve ever been in contact with our local service in your area either? They may be able to offer you some face to face support to get some of those things you feel you’re missing. It sounds as though you’re feeling extremely low at the moment, and if you are feeling that you don’t want to go on please do contact us so that we can offer some help in finding some practical support to take some of the pressure off and help you feel that you’re not alone in all of this.

If you feel that you can’t carry on, or that your husband’s aggression feels abusive, you can also talk to your GP and social services on your own behalf as a carer experiencing crisis. They do have a legal duty to safeguard vulnerable adults and this includes carers as well as the person needing the care.

Thank you and all the best.

I have spent most of my adult life supporting my brother and his very disabled epileptic wife,dropping everything to rush across country to help them with all sorts of problems,when his wife died he was in the throes of vascular dementia so I moved him into sheltered housing,and helped him as much as I could with shopping washing cleaning etc,then my husband was diagnosed with terminal cancer so I had both of them to care for at opposite ends of the town,sadly husband passed away after 21 months of hell,brother had some mini strokes which really kicked the dementia into play,I moved him in with me over 2 yrs ago when he became unable to do anything for himself and also very incontinent,I got in touch with all the so called professionals and all wev'e had from them is hassle,aggro,broken promises and total ineptitude the social worker that has been inflicted on us arranged for respite for my brother who came back smelling like a tramp,he hadnt been washed or changed in 7 days they lost most of his clothes,he spent 7 days stuck in a bedroom with just a tv for company ! the social worker then arranged for more respite in a different home and when the manager came to assess my brother she was surprised the social worker had sent her as the home wasnt for dementia patients and none of the staff had been dementia trained,the last straw was last week when our Admiral nurse (who we havent seen since december) had a chat about my brother and his incontinence with a psychiatrist who has never met or spoken to me or my brother and between them they have come up with the genius idea that will solve all our problems that brother should wear a onsie!!!!! I give up with these idiots,Ive had 2 carers assessments and heard nothing about either of them,whenever I mention a personal budget everyone ignores it or says theyve never heard of it and other than carers coming in for half an hour every morning to shower my brother Im at my wits end with them all

Hi Gloria,

I am sorry to learn of the difficulty you have experienced in getting support for both yourself and your brother.

From reading your post it sounds like you are feeling that you are not being heard by the professionals and that must be very frustrating particularly when you have cared and provided support for your brother for so long. I can appreciate that you feel at your ‘wits end’ and it is really important that you don’t feel alone with the care of your brother. The care plan that your Brother has in place should meet all of his identified needs and I am also saddened to learn that your requests for a Carers assessment for yourself have not received any follow up. Local Authorities must involve you in decisions about support for both you and your brother and you are entitled to a carers assessment to address your needs to enable you to continue caring for your brother. One option might be to speak to the Duty Manager in the Social Care team or to make a formal complaint. Citizen’s Advice has some useful information about making a complaint which you can access from the their website: https://www.citizensadvice.org.uk/health/nhs-and-social-care-complaints…

In your post you mentioned that you have not seen your Admiral Nurse since December, would it be possible to contact them directly to talk through your concern about the suggestion made jointly with the psychiatrist and also your overall feeling that you are not receiving the support you need. I am unsure if your Brother has been referred to a continence service via the GP or if there are any particular issues with his continence that you need support with. It may help to call the Alzheimer’s Society National Dementia Helpline, a helpline adviser would be happy to discuss your situation in more depth and give you more tailored advice and support.

National Dementia Helpline: 0300 222 1122
Monday to Wednesday (9am -8pm)
Thursday to Friday (9am -5pm)
Saturday and Sunday (10am-4pm)

It may also help to widen your support particularly as your experience of accessing social care has not been very positive so far and there may be charities and non-statutory organisations that can support you to access services. You can find out further information about local services available by searching the Dementia Connect database where you find services provided by both the Alzheimer’s Society and other support organisation: http://www.alzheimers.org.uk/local-information/dementia-connect#!/search

The Carers Trust website also enables you to look for support locally through the following link: https://carers.org/search/network-partners

I hope this helps a bit, but please do get in touch with our helpline team if we can offer you further support.

Absolutely shocking. It makes me sick with worry about my own mum. We’ve already been let down by a so called professional psychologist , complete waste of time. Trying to get a carer has also been a major problem although we’ve now managed to get a morning visit but this can be any time between 8 and 12 noon. Organising and getting medication has been an ongoing contentious issue for the past two years. Frustrating times!!!

My dad has vascular dementia & alzheimers he was diagonosed in May. We have asked for support (emotional) but no one seems to listen. My mum is in her seventies trying to deal with my dad she is not in th best of health. My sister and myself try to help th best we can and support my parents but we both work full time and run a house. We feel while my sister and myself are round none of the supprt people will help. My mum is left to deal with day to day care o her own.

Hi Paula,

I am sorry to learn of the difficulty you have experienced in getting support for both you and your parents. It sounds as though it’s been a tough time for all of you.

Have you been in contact with your local authority’s adult social care team for a care needs assessment? This will enable your parents to access practical help (in the form of care, adaptation to the home environment etc.) and may alleviate some of the pressure the family members seem to be under.

Your dad should also be entitled to a council tax disregard. We would advise contacting your council tax office to ask for a disregard form, which you’ll need to complete along with a letter from a medical professional confirming your father’s diagnosis.

It might also be worth speaking to a trained benefits adviser, such as from Citizens Advice (citizensadvice.org.uk), Carers UK (carersuk.org.uk) or a local benefits or carers advice centre, who may be able to help you with claiming any benefits he might be entitled to. Age UK can also provide support: http://www.ageuk.org.uk/

Lastly, Alzheimer’s Society can offer you different types of support. Have you been in touch with your local office? You can find their contact details here: https://www.alzheimers.org.uk/info/20011/find_support_near_you#!/search Alternatively, please feel free to contact our National Helpline on 0300 222 1122. Our team would be more than happy to chat about any of the above and provide emotional support if needed.

I hope some of this is helpful Paula. Please don’t hesitate to get in contact if you have any more questions.

Thanks again and all the best to you and your family.

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