Ruby smiling beside her granddad, George, who sits in a red armchair

‘Grandad wasn’t himself’ - Spotting changes in behaviour before a dementia diagnosis

Ruby and her family started to see changes in her Grandad, George’s behaviour before he was diagnosed with mixed dementia. Ruby tells her story of what these changes meant and how the family dealt with them.

My family and I first started noticing changes in my Grandad, George’s behaviour about four years ago. He had to stop driving due to his eyesight and he seemed really down afterwards.  We thought losing his independence was making him sad and as Nana doesn’t drive, they stopped going out as much.

Grandad wasn’t himself and he seemed bored. We thought maybe he was depressed because they were no longer able to get out and about.  

We didn’t suspect it was dementia at this point, but we did worry that something wasn’t quite right.

Grandad had started asking after a family friend repeatedly out of the blue. My sister and I thought he should probably visit his doctor, but he was spectacularly stubborn. His strong will could be inspiring, but in this case, it made things difficult. He rarely visited the doctor and certainly didn’t want to go when he didn’t think he was unwell.

Nana wasn’t sure what do as she knew that Grandad wouldn’t want other people to interfere. It was a difficult discussion to have about Grandad needing to have a mental health check-up. My Dad and Aunt managed to get Nana on board. Everyone agreed that he needed some help.

We approached the doctor’s appointment as more of general check-up, which made it easier for Grandad to understand. Even so it was a big effort to get him to there.

He’d had the same doctor since the 70s, so he was easily able to see the difference in Grandad. The doctor referred him to have a mental health assessment and he was diagnosed with mixed dementia the following month.

After Grandad's dementia diagnosis

Even though we had an idea of what was coming, Grandad’s dementia diagnosis was a lot to process for our family. But it was also a relief to understand his symptoms and to know that he was on the health services’ radar, if we’d need help in the future.

We’re not sure if Grandad was able to fully understand his diagnosis as his dementia was already quite advanced. And since his memory problems started, he tended to keep quiet if he didn’t understand something rather than speaking out.

I find it interesting that the early signs of dementia, didn’t show up. Nana ran the household, paid the bills and cooked. This made Grandad’s dementia very difficult to spot as to us as there were no obvious red flags. It was only after Grandad’s diagnosis that his dementia symptoms really became apparent to us.

He started finding it hard to follow a conversation. He was always interested in what we were up to, but he stopped asking the usual questions I was used to when I would chat with him. He also started closing his eyes when talking (which I’ve since learned is a way of shutting out stimulus) and twiddling his hair, which I think he found comforting.

Shaving was always part of Grandad’s routine and he took pride in being clean shaven. This gradually fell away, and he stopped wanting to shower too. As his dementia progressed his self-care lessened, which was sad to see. We couldn’t tell if he didn’t want to shower or shave or if he wasn’t aware that he should.

Old photos of a younger Ruby and her sister with her their Grandad, George

Ruby and her sister encouraged their grandfather to see his GP to assess the changes in his behaviour

As Grandad’s behaviour continued to change, I supported Nana by researching dementia and I found the Alzheimer’s Society website very helpful.

I would read up on symptoms and explain to her why Grandad might be behaving in a certain way.  It was reassuring for us both to have this information. 

I’d advise anyone who is worried about a family member’s memory that it’s always better to voice a concern and it be wrong, than not voicing a concern – try to seek help as soon as you start noticing symptoms.

The earlier you can find support the better. It’s definitely helpful to face memory problems head on.

Worried about someone's memory?

If you are worried about the behaviour or memory of someone close to you, Alzheimer's Society can provide free support and advice on what to do next.

Find out more

19 comments

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All the family have noticed a change in mum's behaviour, mood and memory over the past year and finally admitted to ourselves that there was a problem. I contacted mum's doctor who said he would conduct a memory test when visiting her for the flu jab but he didn't. I then arranged a memory test with a different GP by phone which also didn't happen on the agreed date. Then Mum dropped into conversation last week that GP had done a memory test over the phone that day and said she was fine!! She couldn't remember what the memory test entailed though! I rang the doctor as mum is definitely not ok. She eats toffees all day instead of meals, doesn't want to shower or get dressed and has asked me to manage her money as she can't cope with banking, online shopping and has got into a real mess with ordering from Amazon. GP wouldn't tell me anything so me and my sister have applied for POA . Once that comes through it's back to the GP to request an assessment and referral for a diagnosis.

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My mother’s mother had dementia, mums memory had been deteriorating over the last 3 years she had given me power of attorney, recently she wasn’t paying her bills so I set up direct debit for her now she is accusing me of stealing from her, I live 3 hours away from her but she has 4 grandsons that check up on her she had said that I’ve been there when I haven’t and that I’ve taken all her paperwork. When I ring her she hangs up on me. She has an appointment to see a memory dr. Which we have had to wait 2 months for. When her GP tested her she scored 26. She has said to the grandsons she doesn’t want me there at the dr’s. She miss places her keys and bank cards, cheque books and it’s always someone has taken them. I’m not sure what to do. She refuses coming to live with me or for me to live with her.

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Over the last 18mths I noticed my Dad's (94yrs) behaviour changing. He had a fall and spent 3 weeks in hospital, where he was diagnosed with Vascular Dementia. He was discharged from Hospital and by ambulance admitted into the hospital section of the retirement Village they live in.
My Mother after 62yrs of being married is suffering from Anxiety, Insomnia, Panic attacks. My sisters and I stay with her everyday from 8am - 1pm and go with her to visit Dad. We are praying medication and support will help my Mum.
I am amazed at how this has affected everyone I my family, my Dad, Mum and us sisters? It is a situation that can force a family apart (in different directions).
Being part of a support group, decision making, finance management, agreeing on many aspects involved with both parents.
And understanding that, supporting each other and taking time out physically and emotionally is at the top of the list.

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My mum is 92 and diagnosed with Alzheimer’s and vascular dementia 2 years ago. Though the signs were becoming apparent before that. Until one week ago she was perfectly able to remain in her house with my two sisters and I caring for her. She was physically very fit and we would go for long walks with my dog. However, just two weeks ago she became disoriented and persistently fell asleep. I decided to take her to my home and keep an eye on her. She became worse, losing her balance and fell down some of my stairs twice and in her bedroom. I ended up sleeping with her because I was so worried. Eventually, when she wouldn’t get out of bed I called her doctor, who without seeing her prescribed antibiotics for a kidney infection. I was forced to call 111 again as there was no improvement, they said call an ambulance. Mum has been in hospital since 13 January and was tested positive for Covid but the consultant is saying it’s the dementia worsening that caused the symptoms. Can this happen so quickly, in one week? When I researched symptoms for elderly Covid mum has them all. We have experienced problems getting updates from the hospital and it appears they are just leaving her to sleep with no stimulation. I appreciate how busy they are but I have stressed how active she was up until 2 weeks ago. Once she tests negative apparently they will arrange for her to return to my home. They need to assess my house, can anyone let me know the requirements please.

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Hi Val,

Thanks for getting in touch. It sounds like you're going through a really worrying time.

We'd strongly recommend calling our Dementia Connect support line on 0333 150 3456. Our dementia advisers can provide information and advice specific to your mother's situation. They can also provide you with support whenever you need them: https://www.alzheimers.org.uk/dementia-connect-support-line

You may also find it helps to talk with other people who have gone through or are going through similar experiences. Visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/ It's free, and open day or night.

We hope this is helpful.

Alzheimer's Society blog team

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Hi there.
I have unfortunately just lost my wonderful dad due to Covid causing a fast increase in his Dementia. He was in hospital for 3 weeks from the 27th of December last year and the change when he came out was just unbelievable. We cared for him at home but it was getting worse by the day. Eventually we decided to have a respite and put him in a home on the 5th of Feb and sadly he deteriorated so quick he passed away on the 15th of Feb.
I have many questions that need answering to be honest from the people that looked after him.
I would love to hear back from you.
Kind regards.
Andy

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Andy, we are so sorry to hear about the recent loss of your dad. This must be an incredibly difficult time for you.

You can speak to our dementia advisers through our Dementia Connect support line on 0333 150 3456. They're available by phone seven days a week: https://www.alzheimers.org.uk/dementia-connect-support-line

Or, if you'd prefer to contact them via email, you can do so by emailing [email protected]

We hope this is helpful for now.

Alzheimer's Society blog team

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My dad was diagnosed with mixed dementia a couple of months ago, following a video consultation with the memory clinic. He seems quite happy in himself and he and my mum have found a routine which suits them. The memory clinic want him to use Alzest patches to help with his memory but we are very reluctant after reading the side-effects. Does anyone have any experience with this medication?

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Hi Kathryn,

We are sorry to learn about your dad's recent mixed dementia diagnosis, but we're pleased to hear your parents have found a good routine.

If you're looking to chat with other people affected by dementia, we'd recommend visiting our online community, Talking Point. Many people find it helpful to talk with other people who have gone through or are going through similar situations. It's free, and open day or night: https://forum.alzheimers.org.uk/ It's free, and open day or night.

We hope this helps for now.

Alzheimer's Society blog team

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My roomate had alcohol dementia has turned our life upside down memory he lying lot misplacing things he 56

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I completely understand what you are going through. Dad was diagnosed inMay with mixed dementia. There are good and bad days but the family is on hand to help even in these chaotic times. Don’t know what tomorrow will bring but we are just going one day at a time.

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My husband passed away at the end of December . He had both vascular dementia & Alzheimer's although it was other issues he died from. I knew for some time he had dementia although his memory issues were attributed to hs other illnesses . He himself did not think anything was wrong and would roll his eyes and tell the Doctors he was only there because I'd asked him to go, When he finally received his diagnosis he was prescribed medication which did actually help. Although I miss him very much I am grateful that I was spared the trauma of him eventually not knowing who I was as he still recognised friends & family right until the end of his life .
I'm glad I pushed for a diagnosis as it helped me understand what he was going through & would do the same again

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This was so similar to my mum, who wouldn't visit her GP and became very defensive around seeing anyone in healthcare or about any sort of help. You may find suggesting that the suggestion of a 'general check up' (both patient and GP) is useful. We are still awaiting a formal diagnosis as trying to get her in for her CT is difficult as she will hate that too and the appointments system is under pressure. You may also find the book 'Contented Dementia' by Oliver James useful.

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I have the same exact issue with my mum. Our problem is she lives a distance away from us, so it’s over the phone mostly we have noticed the difference. Yesterday she asked me, how’s our mum. It took me a few seconds to twig that she meant her mum, She’s 76 and her mum died at 58. It was heartbreaking as I had to explain her mum died years ago. Her doctor wouldn’t allow me to make an appointment for her. So I have now written to him explaining that the situation. I wait to hear back. I just want a check up for her as she’s always been massively independent and fiercely stubborn. I hope they see sense and call her in and hope they tell me when the appointment is so I can call her and remind her..

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Sorry to read this. It reminded me of my first warning with my mum I went through vascular dementia with her and initially it was hard to persuade her to go to the doctors even with me going with her . They should make you an appointment or at least agree to call her and also keep you informed as you are her next of kin so you can be involved - it’s wrong that you cannot air your concerns. I made the appointment for my mum with my doctors so if you have any issues you may need social Svcs to get involved . Also if mum keeps asking about someone who has passed away. Try to move away from the conversation or just say they are ok. At first I used to think it was ok to tell
Them the truth. Thinking it would eventually sink in but then realised it was like mum was Hearing it for the first time every time she asked me and so she just got upset all over again I started to say “oh everybody is fine “and switch the conversation so she remained calm and happy xx hope you get sorted

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I didn't find my dr helpful at all. I think we went back 3 times before they referred my husband to the memory clinic. They were and still are so very helpful and he is now on medication for mixed dementia

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Thanks Lesley.. it’s really good to hear I’m not alone. As I have felt very much so over the last year. I’m on my 3rd furlough from work and shielding due to health issues. So have felt quite isolated, whilst worrying about mum and what to do. I feel better now I have written a letter to her GP and if I don’t get a response I will have no choice but to call social services. I hate the idea of this as mum is such a private person. I try to keep the conversation light with her so as not to upset her. I’m now wondering if she thought she was talking to her sister and not me at one point. Oh well, thank you for your reply and advice. It was very kind of you to reply.

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I had to fill out a form for my Mum's doctor's surgery which allows me to make appointments, talk to the surgery and order her medication so try to see if you can get that. You can fill it out and your Mum will need to sign it.

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That's a touching story, and also really helpful tips for people whose parents already got old without conducting any dementia diagnoses.

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