Dementia and Alzheimer’s touch almost every family in our communities, robbing loved ones of their precious memories while piling pressure onto relatives who are left to act as carers.
Now, a special investigation by The Press and Journal can reveal the true impact of the diseases on people living in the north-east of Scotland and the Highlands and islands.
Our research, which analysed 20 years of dementia data, reveals:
- Deaths linked to dementia and Alzheimer’s reached more than 6,200 in 2022- with the death rate tripling in Aberdeen and Aberdeenshire since 2002 and almost quadrupling in the Highlands.
- More than half of the people living in our care homes across the north and north-east have been diagnosed with dementia.
- More women are dying from dementia and Alzheimer’s than men – with two thirds of all dementia deaths in 2022 in women.
- The cost of dementia care across Scotland is significant – Shetland and Aberdeen have some of the highest costs to both residents and the council.
As part of our investigation, we also spoke to those living with the illness and their families, who told their stories in a special video series which you can see here.
We’ve illustrated the “cost” of dementia- both socially and financially by speaking to experts, using data from National Records of Scotland, Public Health Scotland and freedom of information inquiries.
Is the number of people with dementia in Scotland rising?
Across Scotland, it’s estimated that over 90,000 people live with dementia.
This includes Alzheimer’s disease, and the different types of dementia which include vascular dementia, frontotemporal dementias and lewy body dementia.
The council within the north-east, Highlands and Islands area with the highest rate was Shetland, which had the 10th highest rate out of all the local authority areas and a rate of 61.03 deaths per 100,000 population in 2022 – 13 recorded deaths from Alzheimer’s.
These figures show that the number of deaths from dementia, and by extension the number of diagnoses of dementia are rising.
We asked the body responsible for recording vital event statistics why.
Daniel Burns, head of vital events statistics at National Records of Scotland, said: “Deaths from dementias are one of the highest causes of death in Scotland. The mortality rate for 2022 is twice what it was in 2000.
“The increase may partly be driven by increasing life expectancy, particularly among females, and the high number of children born in the post war years reaching the age at which Alzheimer’s and other dementias are the leading cause of death.”
The mortality rate across Scotland, which scales deaths to the size of the population, has doubled – rising from 56 in 2000 to 121.1 last year.
Rising dementia diagnoses could be a result of ‘greater awareness’
But NHS Grampian consultant psychiatrist Jonathan McLaughlin, who is based in Aberdeen, believes the increase in numbers might be due to an increased awareness of dementia in Scotland.
He said: “I have a sense that there’s a greater recognition of dementia, and there’s a greater propensity to diagnose it now. I think there’s probably a greater propensity to put it as a cause of death on death certificates.
“It’s put on death certificates along with things like pneumonia, which at that stage when you’ve had advanced, severe dementia for that many years, becomes an opportunistic infection. On a long enough timeline with dementia, you’re bed bound usually, and then you’re prone to all of the opportunistic conditions like bed sores, constipation and infections can take hold and cause sepsis and the end of someone’s life.
“So on death certificates previously it might have just been pneumonia, because the question is how does dementia kill you? The early symptoms are cognitive decline, memory problems, visio-spacial problems and the other things that are out front and in your face.
“On a long enough timeline it’s a whole body disease, it affects your central nervous system, and eventually can be physically debilitating- people’s co-ordination and movement, falls, all comes into play and there’s a lot of evidence that says if you fall and break your hip, exponentially your chance of dying in the next five years is significantly increased.
“That’s what kills you in the end, your central nervous system starts to malfunction and decline to the point you’ll have other frailties and opportunistic infections and that’s what kills you.
“I think there’s generally more recognition, there’s more diagnosis of it now, while previously people might have just been said to be a bit dotty or senile, or getting a bit old. Now there’s a bit more codification of diagnostic criteria, more availability in investigation and more awareness and support.”
Does age play a part?
As we age, our risk of developing dementia increases.
As the chart shows, the majority of people who have had dementia recorded as a cause of death from 2016 to 2021 were over 80-years-old.
Dr McLaughlin runs a young-onset dementia clinic within NHS Grampian, for people under 65.
He said: “In the young-onset population we see a lot of frontotemporal dementias, it’s a rarer diagnosis and the rarer forms are more common in under 65s, but still our number one cause we see is Alzheimer’s disease.
“The advent of young-onset clinics speaks towards the recognition of dementia in younger age groups to make diagnoses and early interventions to try and manage things at an earlier stage before things reach an infection point of psychosocial failure, distress etc.
“In under 65s a lot of them might still be working, have families, there’s a lot of psychocultural factors that are different for that group of people. There’s a number of different pathological causes of dementia and trying to diagnose it earlier I think in the years to come will see a shift to early stage changes or diagnoses, or pre-clinical diagnoses will come into play with new drugs.”
The above chart shows the correlation between the percentage of people above the age of 65 and the rate per 100,000 population of deaths from dementia.
Dumfries and Galloway has the highest percentage of people living in the area over 65 at 26.59%, and had the second highest deaths per 100,000 rate in 2022 of 99.47. The Western Isles had the second highest percentage of its population over the age of 65 at 26.55%, and had the highest deaths per 100,000 population rate last year at 108.86.
As the chart shows, the age of the population doesn’t necessarily always fit the narrative of the older the population, the higher the rates, but it does appear to have some impact.
Does gender play a role in getting dementia?
The data shows that people with dementia tend to be older, but what about the impact of gender?
The above chart shows that the number of people who have died from dementia from 2000 to 2022 has increased each year, with the gender split becoming wider.
In 2022, 4,139 women across Scotland died from dementia and Alzheimer’s, while 2,138 men died. This means 66%, or two thirds of dementia deaths were in women, while 34% were in men.
This is compared to 3,473(70%) women and 1,037(30%) men in 2010, and 1,478(73%) women and 535(27%) men in 2000.
The impact on care
Many people with dementia may need specialist care, particularly when in more advanced stages.
Due to the risk of being diagnosed with dementia increasing with age, the likelihood of that person being in a care home is also increased.
Care homes are by far the most common location of most dementia deaths with 3,389 people dying in a care home in 2022.
NHS hospitals were the second highest category, with 1,366 deaths in hospital in 2022.
Less than a thousand people across Scotland died at home or in another non-institution setting last year.
Data available from the Public Health Scotland Care Home Census shows that more than half of the percentage of long stay residents in care homes have medically diagnosed dementia.
There are also people with dementia which has not been medically diagnosed.
Across the north-east, Highlands and Islands, Aberdeenshire has the highest percentage of people in care homes with dementia, including both diagnosed and not diagnosed.
Shetland has the lowest percentage out of the north-east, Highlands and Islands, and the third lowest percentage of long stay residents with dementia in Scotland.
In hospitals, people with dementia might also see a delayed discharge to an appropriate care setting.
A delayed discharge usually occurs when a patient is ready to leave the hospital, but there is not an appropriate place for them to return to, whether that is for care, support or accommodation reasons.
A freedom of information request was made to all health boards, but only a few returned an answer, including NHS Grampian.
As the above data shows, there was a dip in the number of delayed discharges across Scotland due to Covid-19, but totals have again since risen.
In the north-east, delayed discharges in patients living with dementia were lower in March and April 2023, the most recent data that was available, than in previous months, but delayed discharges among dementia patients has been generally the same as before the pandemic.
People living with dementia ‘will have fallen through the cracks’
Many people with dementia who are still able to live at home with support from carers benefit from accessing services which helps with socialisation, as well as other things.
Befrienders Highland provides regular one-on-one phone calls for people with memory loss and their carers across the Highlands, as well as other services.
Carol Summers, senior befriending co-ordinator, said the charity takes a lot of care in matching people up to volunteers, taking into account their interests and backgrounds to help foster a bond.
She said: “We do the same with people with memory loss to the extent they can understand the questions, and we’ll have a chat with family members and hear about them so we can match them up with someone who they will have something to talk about with.
“It’s really good to have someone at the other end of the phone, it builds up a routine and that connection.”
She added that the Covid-19 pandemic has led to the closure of many services, which has negatively impacted those requiring care as well as their loved ones.
She said: “I really do believe that the people who were hit hardest during Covid were people living with dementia and their carers. All social contact was removed and with the right social contact you can kind of slow deterioration down. It was just a horrific time.
“I don’t think we’ll ever get back to the same level of social connection there was before, I don’t think we’ll get back to the same level of services provided before covid. I’m talking about statutory services, care at home, lunch clubs, things that just folded during Covid.
“There’ll be a lot of people who have fallen through the cracks and won’t be able to get social stimulation.
“Befriending won’t work for everyone, we need more care at home and day services, things in the community people can go to.
“I’m sure every community wants to provide services, or a warm place to go, but it’s getting the funding to do that. There needs to be more support.”
The financial cost of living with dementia in Scotland
Although some people living with dementia do remain at home, either with family or with assistance, many will be living in care homes across the country.
If a person has been assessed as requiring care by their local authority, they are entitled to free personal and nursing care in Scotland.
However, they can be expected to cover other costs, such as the accommodation itself, dependent on their capital and assets.
Savings or property can have a big impact and it is likely most people will have to make some contribution towards the fees.
Those above the upper limit – £32,750 – are deemed self-funded and those below the lower threshold – £20,250 – will receive council funding.
People within the two limits will need to contribute some costs depending on their capital.
Aberdeen had the highest average costs per week at £1,645. This is compared to £823 a week in 2012.
Orkney and Aberdeen also had high costs, with both reaching more than £1,000 a week in 2021-22.
A spokeswoman for Shetland Islands Council said: “Shetland Islands Council acknowledges that care costs in Shetland are higher than elsewhere in the country. There are a number of reasons for this, including the fact that the overall cost of living in Shetland is higher than in other areas.
“Our commitment to delivering care close to home in all our localities also means that we have some very small care homes and hence the lack of economies of scale that we might if we were not so locality focused.
“However, Shetland has maintained its staffing numbers within residential care to ensure the quality of care, and as an acknowledgement that we have no specialist facilities in Shetland. Social Care works very closely with health colleagues and we make every effort to manage complex care within Shetland to ensure residents are able to maintain the local connections that are important to them. As a result, very few older people with dementia require to transfer to specialist units on the mainland.”
Where to go to get help
If you or a loved one need support with dementia, there’s a range of different support options available.
Alzheimer Scotland provides a 24 hour freephone dementia helpline, which will give information and signposting to resources, as well as helping with emotional support for people with the illness, as well as their friends and families.
This includes helping someone to understand dementia, find out how to get help locally, assistance on financial and legal matters, rights and entitlement, care and anything else around dementia.
It is confidential, and can be accessed by calling 0808 808 3000.
The NHS also has compiled information which can be used by carers or family members who are looking after those who need assistance, and covers topics such as how to help with everyday tasks, washing, dietary needs, sleep and incontinence.
Advice on dementia is available on the NHS UK website, which you can access here.
Dementia UK also runs a free and confidential dementia helpline staffed by specialist Admiral nurses. You can also book virtual clinics to discuss any concerns.
The helpline is open from Monday to Friday 9am to 9pm and on the weekends from 9am until 5pm, with the exception of Christmas Day.
It can be accessed by calling 0800 888 6678.
Conversation