Dementia Support Line
Dealing with embarrassing situations in public with people with dementia
Difficulties in everyday public situations can be distressing and embarrassing for people with dementia and carers. Helpline Supervisor Alex Clay points us in the right direction to find solutions.
'I was paying at the supermarket checkout with my dad when he started shouting at me for stealing his wallet. I had it because he takes so long with coins. Dad snatched it off me saying he could do it, but he took ages. Everyone in the queue was staring and I felt so embarrassed! I won't take him with me again.'
Everyday situations in shops, on the high street and at the bank can become fraught with distress, embarrassment or even anger when someone with dementia struggles to understand or communicate something in a moment of memory loss and confusion.
It's only reasonable to expect the person to accept assistance. However your dad may not recall the difficulty he has in handling money or comprehend the need for help. Alternatively, he may understand but feel his independence is being taken away.
We love our queues and their delicate social etiquette. The smallest infringement can cause unease. A person might be so confronted by the task of tackling their memory loss that social etiquette is the least of their worries, or it is forgotten entirely. For the carer the pressure of disapproving or even sympathetic looks can be overwhelming.
How to deal with embarrassing behaviour
There are no simple solutions, but it can help to break down the component factors of the problem to find what may be at its root:
- memory loss
- the person's anger in losing independence
- the carer's complex emotions in witnessing the person wrestle with the disease so publicly
- the carer's frustration at the person not accepting help
- pressure not to hold up the queue
- paying for the shopping
- embarrassment and guilt for both the person and the carer.
Focus on the positives
If the person regularly experiences difficulties they might need help to avoid these situations, but it is important to consider other priorities.
Many aspects of everyday activities such as shopping trips can be very positive for the person with dementia and the carer - the journey, interaction and stimulation, practical tasks that help to maintain skills and a chance to feel involved in everyday life.
When problems outweigh the positives there may be decisions to make about adjusting lifestyle and routines, but considering all the factors involved can be difficult in the heat of the moment. Support, counselling and advice for carers can help to avoid hasty choices and to face any difficult decisions that may be required.
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Dolly
saysFeeling Lost
saysMy elderly parent is not adjusting to the fact we're in the middle of a pandemic and does things like spontaneously opening the door and chatting to people delivering things without even wearing a mask, or she touches things that have just arrived and then handles her eyes and face. I'm disabled and have complex immunity issues, and so am scared by her risky behaviour, especially since it's just the two of us here and we spend a lot of time in the house together. She inevitably creates an embarrassing crisis just as we have someone visiting (tradespeople, family, friends, etc) - typically through rashness, impulsivity, emotional reactions or not being ready. She often keeps me up till 4 or 5 am many nights and I'm chronically sleep deprived. Not sure how to cope with this...I try to be super organized, to provide routine, and to prompt her carefully but even that isn't helping any more. Her behaviour is making me feel isolated from our support network at a time when I most need this myself.
Alzheimer's Society
saysHi there,
We're very sorry to hear about your parent, it sounds like you are going through a really difficult time.
If you're based in the UK, we would strongly recommend calling our Dementia Connect support line on 0333 150 3456 to speak with one of our trained dementia advisers. They can listen to your situation, and provide specific advice, support and information. More information on opening times can be found here: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line
We hope this helps.
Alzheimer's Society blog team
Edward F. H. Chisnall
saysMy wife is 79. She was diagnosed with vascular dementia last year but has been exhibiting symptoms and behaviour problems for two to three years. Her mental health doctor talks about her 'stroke', but I cannot remember an stroke. The past few years have been horrible for me as husband and cater. I have been accused of serial infidelity and a female neighbour was assaulted by my wife and I by her husband. The police were involved and on a previous occasion when she was very drunk (stopped drinking now) and a attacked me. I was subjected to racial abuse (I am Jewish,) and accused of stealing her clothes to sel in vintage outlets, also of stealing money from her purse. I had no access to my own money but have since opened my own bank account, acquired power of attorney, and on a DWP list as her career. The delusional behaviour was made worse because the family was in denial and would not accept that she was ill. The irrationality seems to be under control by drugs, but confusion, long and short term memory grows daily worse. She is also crippled with arthritis. Her unmarried 60 year old son has aspergers syndrome and is the apple of her eye. The mental health people failed to diagnose her for a long time, and as various bits of help have been given, apart from her daughter married with children but very caring, I am essentially on my own. I am very worried if I can cope as he gets worse. I am 76 and have suffered a major cardiac arrest 14 years ago and have id have ice heart disease and busphoritis. I get very very tired. She cannot be left alone, specifically by me and she panics if I am not here.
Dear Edward, thanks for your blog comment. I’m sorry to hear about the upsetting experiences you have been through over the last few years. It sounds like you have been subject to enormous strain. It’s good to hear that some of your wife’s distressing symptoms are now better managed by medication, but it sounds like you are still being faced with further difficult challenges in your caring role (I’m also sorry to hear about your wife’s severe arthritis and increasing confusion) and it very much also sounds like you are not getting any additional support and are (as you also indicate) trying to manage everything on your own, and have been doing so for some considerable time. Your concerns are therefore very understandable.
It may be worth making your and your wife’s GP aware of your situation, and of the fact that you may now be starting to struggle, as they may be able to access some help for you on your behalf.
You may also be able to access some support from a local dementia support service. If you click the following link and enter your postcode or county or town name, your nearest service should be displayed: https://www.alzheimers.org.uk/find-support-near-you.
It is also important to consider contacting your local social services or ‘adult social care’ team (as they are also known) to request an urgent ‘carer’s assessment’ for yourself, and an urgent ‘needs assessment’ for your wife, in order to help work out what support you might benefit from, such as respite care. You should be able to find the relevant contact number on your council’s website, under the heading ‘Adult Social Care’, or via this link: https://www.gov.uk/apply-needs-assessment-social-services
Please do also consider contacting our National Dementia Helpline on 0300 222 1122 to talk things over and explore what support there might be for you and your wife. The National Dementia Helpline offers information, advice and emotional support to anyone affected by dementia, including those in a caring role. A referral to local services and/or social services in order to assist you in accessing more practical help and support can also be made on your behalf by the helpline. The helpline is open 7 days a week and you can find more information on the helpline’s opening hours here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline. Best wishes, Alzheimer's Society Helpline team.