Read the answers to your questions about dementia from Red & Yellow Care's expert panel.

[KathrynMumsnet]

Did you know that two thirds of people with dementia in the UK are women?

This week we’re running a Q&A with Red & Yellow Care about living with dementia.

Here’s what Red & Yellow Care say: “We are a pioneering care provider for the over 50s. We are committed to dramatically improving health and wellbeing in later life by developing smarter and better care solutions. We provide bespoke and responsive health and social care services, with a specialism in dementia and other long-term conditions prevalent in later life.”

“Recently, we have sponsored a report by Alzheimer’s Disease International on “Women and Dementia: A global research review” written by Dr Rosie Erol, Professor Elizabeth Peel and Professor Dawn Brooker. It aims to understand the main issues affecting women in relation to dementia. The report examines the effect of gender on three specific groups: women living with dementia; women caring for people with dementia in a professional caring role; women undertaking an informal care giving role for someone with dementia. The review shows that the impact of dementia on women including those in the UK is significant and disproportionate, highlighting the need to provide women with much better support whether they are a person with dementia or a caregiver.”

Red & Yellow Care have organised a panel of experts to answer any questions you may have about dementia, and in relation to women in particular. The panel comprises of, Dawn Brooker (PhD, Professor of Dementia Studies at the Association for Dementia Studies at the University of Worcester and co-author of the ADI Report quoted above), Dr Nori Graham (Vice President at the Alzheimer’s Society and Alzheimer’s Disease International) and Vivien Ziwocha (Nurse Consultant and Head of Care at Red & Yellow Care).

Post your questions to the panel on this thread before 12th June and we will select 15 to send to the panel. We will then post a link to their responses on the thread on 18th June.

The first 30 posters who post a question will receive a free 20 minute telephone guidance session with any member of Red & Yellow's specialist clinical team.

That could be with one of the following specialists:

Consultant Psychiatrist
Consultant Geriatrician
Clinical Psychologist
Specialist Nurse
Occupational Therapist
Speech & Language Therapist
Dietician

Thanks and good luck,

MNHQ

@Corygal

Since his mid-60s my dad has shown signs of confusion - memory loss, losing his way in the locality he's lived in for 40 years, vagueness, and so on. He's also had some, er, 'personality changes' that seem to be exaggerations - to a very unusual degree - of traits that he's always had a bit. He drinks about a bottle of wine daily.

Now 78, his memory is getting worse; he's more easily confused and a lot worse tempered. The drinking hasn't stopped. He was assessed for dementia a few years ago, and, to family dismay, given the all clear.

Should we get him tested again? And what effect does alcohol has on dementia? If it is dementia, is the drink making it worse? Or could it just be drink? Either way, what do we do?

Thanks a million in advance.

Definitely get your father tested again. Especially in the early stages, dementia can be difficult to diagnose and may be missed even after a careful assessment. If your father is getting more confused it may be a sign he does have dementia and getting a diagnosis is important. Changes in personality, such as getting more short-tempered can also be a sign of dementia. The relationship between alcohol consumption and dementia is not clear-cut. Drinking a little (1-2 units a day) seems to protect against dementia, but prolonged heavy drinking may increase the risk. In your father’s case, the changes you have noticed could just be due to drink, but once someone has dementia, the effects of alcohol may be exaggerated (leading to more confusion and irritability). It may be better if your father cuts down his drinking if you can persuade him to do so but do ask for another assessment from a doctor such as an old age psychiatrist or geriatrician.

@CMOTDibbler

My mum has reasonably severe dementia which first affected her in the temporal lobes, though now she is generally impaired.

She has problems with food and drink (I think in recognising it and co ordinating everything), but the strategies my (very frail) father has developed previously are now failing, and its particularly hard to get her to drink anything. Is there anything you can recommend? He models drinking, she has a straw usually, he tries different drinks through the day, and has tried closed cups/sports bottles.

You could try placing drinks, fruit and vegetables around the main living area and prompt your mum on a regular basis. In addition, try regular intervals of sitting down and having something to eat and drink as a prompt for her. Unfortunately, the person with dementia can forget to eat and drink hence finding non-verbal cues that prompt eating and drinking is the best way of promoting regular hydration. If you are in doubt or worried, it is advisable to ask a speech and language therapist to assess the situation and put an appropriate management plan in place.

@FlamingPie

How is dementia disagnosed - a relative has been showing severe memory loss and confusion which casues them much distress but nothing has been seen on a brain scan. Is there other symptoms of dementia we need to be aware of that can be tracked through tests?

It is important to remember that brain scans can be normal in someone with quite advanced dementia. In fact, a brain scan is only a small part of the process of diagnosis and sometimes a patient does not require a brain scan at all.

Diagnosis of dementia is based mainly on a doctor taking a full account of the persons problems, ideally from the person themselves AND a relative or someone who knows the patient well. In addition the doctor – e.g. an old age psychiatrist or geriatrician – will want to do some tests of brain function such as memory, concentration, recognition and language. These can usually be done in a simple questionnaire, which takes 10-15 minutes. There should also be an assessment of the persons day-to-day activities (such as cooking or dressing), ideally by an occupational therapist who may spot changes in ability to these tasks.

@madsmam

Are you aware of any resources for understanding Alzheimers'/Dementia which are pitched at children, my DD12 and DS10 are both becoming more worried that Granny will forget them. I have tried to reassure them that emotions can linger when memory is gone, so even if she doesn't know exactly who they are, she will know she loves them, but I wonder if I could help them understand better.

Explaining Alzheimer’s and other forms of dementia to children can be difficult. Your guiding principles should be giving information that is simple and specific, allowing for further questions. Avoid overload of information as this can lead to confusion. Below is a link to a publication by the Alzheimer’s Society, which I have found provides really simple and easy to understand information about the disease. I hope you find it helpful. www.alz.org/documents/national/brochure_childrenteens.pdf

@emwithme

My father (age 72) and (paternal) grandmother both had/have (early onset) Alzheimer's (father still alive but not oriented in space, place or person, in care home because stepmother unable to have him at home for his own safety and that of others in the home).

I am 38. Is there anything I can do NOW to prevent this happening to me or is it just the genetic "luck of the draw" and hope I've got a decent gene from my maternal side (where grandmother was fine until age 92 but then rapid descent until age 96).

In terms of planning for the future - can I plan what I want to happen now (a living will or similar) in terms of care home etc and will it still be binding (assuming updated for changes in law etc) in 30 years' time?

It really depends on how young the relatives are on your father’s side when they developed dementia. Dementia starting in different family members when they are in their 40s or 50s suggests there may be a gene that causes Alzheimer’s disease in the family. If so there is a 50% chance of inheriting this gene, but only if your father also has the gene. It does not normally skip generations, so if your father remains healthy you won’t have the gene for early dementia. However if you inherit the gene, you will almost certainly develop Alzheimer’s disease and unfortunately there is no way of avoiding this.

If you don’t have the Alzheimer gene, like everyone else there is still a small risk of developing dementia in later life. Recent evidence suggests that up to 20% of late onset dementia can be avoided by keeping healthy. Basically do the same as you would to keep your heart healthy; eat healthily, exercise, watch your weight, don’t smoke and get your blood pressure checked regularly.

@Corygal

How long do most people stay in a care home? It used to be under a year, but from friends and family alone I know that the final stages - bedbound, speechless, needing feeding - can last up to five years. What are your current figures/thinking on care home duration times?

This is a difficult question to answer categorically as routine data is not collected. Reports and summaries from Laing & Buisson who publish independent annual reports on costs and use of care homes cite a reasonable estimate of average length of stay is around 2 years for a nursing home and 3 years for a residential home. However, this is an average (mean) figure. There are huge individual variations. People’s health varies enormously when they come into a care home. Someone who is in their 80’s but in reasonable physical health may live for another 8-10 years. A person who is very physically frail may only live for a few weeks or months. Also, the move into a care home may lengthen someone’s life expectancy if they have not been getting good nutrition at home for example. On the other hand, others who are relatively fit may actually pass away very quickly within a care home setting. Sometimes, the move into a care home appears to precipitate this.

It really is difficult to predict. Most people want to stay in their own home for as long as possible so any decision to move into a care home has to be weighed against this wish. On an individual basis we need to decide whether this particular person’s quality of life will improve by going to live in a particular care home. If the person is unable to make a decision themselves about this then we need to make sure that it is in the person’s best interest and try to ensure that it will be suitable to their personality and needs. It is best to make that decision based on the here and now rather than predicting what will happen in 2-3 years’ time.

@piechuck

What plans can be put in place for a future with dementia?

What other steps should be taken before the onset of the disease, to minimise the burden on other family members?

Recent evidence suggests that up to 20% of late onset dementia can be avoided by keeping healthy. This basically means do the same as you would to keep your heart healthy; eat healthily, exercise, watch your weight, don’t smoke and get your blood pressure checked regularly. There is no guarantee that this healthy lifestyle will prevent dementia but it is good for your general health anyway.

It is also important to plan for the future. Putting in place a Lasting Power of Attorney, ensuring you have a living will and creating an advanced care plan/statement, will provide information and guidance on your wishes should you be unable to communicate your needs if you develop dementia.

Below is a helpful brief description of three options written by our Medical Director, Dr James Warner:

The first is a living will (called advance decision), which allows you to set down now what treatments you do not want to have in the future. A living will cannot tell professionals what treatment or care you do want to have but allows you to refuse, at a time when you may not be in a position to say so, treatment and care. Living wills have to be quite detailed- you need to specify which treatments you want to refuse, and are best set down in writing, signed by you and witnessed. You have to have mental capacity at the time you write the living will. A properly constructed and valid living will is binding.
The second option is an advance statement. This allows you to inform professionals of more general views you may have about how you want to be cared for. It is not legally binding and does not allow you to refuse treatments.
The third is a Lasting Power of Attorney (LPA) for health and welfare. You can also set up a LPA for property and financial affairs. An LPA allows you, while you have capacity to do so, to nominate someone who will make decisions on your behalf if you are no longer able to do so yourself. The attorney you appoint will be able to make decisions for you about your treatment and care, so its good to appoint someone who knows you well and understands what your preferences may be.

When putting one of the above in place when someone already has dementia, it is advisable to get a doctor to assess the individual’s mental capacity to take such a decision; this avoids the decision to be easily challenged in the future.

@piechuck

What plans can be put in place for a future with dementia? My mum knew cared for her mum with the disease and always said that she would want to be cared for in a home when she 'got like that'.

Now she is suffering and my dad refuses to put her in care as she requested. Is there such a thing as a living will that could specify the care that she wanted? Is there any insurance that can be taken out to pay for it?

There are three options available to you. All these options can apply if you lose the ability to decide for yourself about your treatment and care.

The first is a living will (called advance decision) which allows you to set down now what treatments you do not want to have in the future. A living will cannot tell professionals what treatment or care you do want to have but allows you to refuse, at a time when you may not be in a position to say so, treatment and care. Living wills have to be quite detailed- you need to specify which treatments you want to refuse, and are best set down in writing, signed by you and witnessed. You have to have mental capacity at the time you write the living will. A properly constructed and valid living will is binding.
The second option is an advance statement. This allows you to inform professionals of more general views you may have about how you want to be cared for. It is not legally binding and does not allow you to refuse treatments
Perhaps a better option is a Lasting Power of Attorney (LPA) for health and welfare. You can also set up a LPA for property and financial affairs. An LPA allows you, while you have capacity to do so, to nominate someone who will make decisions on your behalf if you are no longer able to do so yourself. The attorney you appoint will be able to make decisions for you about your treatment and care, so its good to appoint someone who knows you well and understands what your preferences may be.

When putting one of the above in place when someone already has dementia, it is advisable to get a doctor to assess the individual’s mental capacity to take such a decision; this avoids the decision to be easily challenged in the future.

Regarding insurance, some specialist insurance companies offer care fees plans, also known as care fees annuities. The care fees plan is purchased with a one-off lump sum payment, which is non-refundable (unless some form of capital protection is included). The income paid out by the insurance company is then paid for the rest of your life, leaving your remaining capital ‘ring-fenced’ from future care costs. The income is tax-free.

When planning for future care costs, it is advisable to see a financial planner, preferably a member of SOLLA, the society of later life advisers.

@NotCitrus

Another query as to the first signs - my mother is definitely repeating herself more and more and listening to anything I say less and less, but how much of that is "normal"? My dad has started finding organising getting out of the house more a chore and between them can faff for ages - again, how much is normal vs when should I poke them to go to the doctor?

Both their mothers had dementia (one vascular, one Alzheimer's ) for over 10 years, but by the time medics were involved they were pretty far gone - both became clear when my grandfathers had strokes.

Also my parents say they have an insurance policy to cover all nursing home fees that may be necessary - do such things cover until death, and what if the local nursing home is full? Both are late 70s and I'm an only child so I'm going to have to deal with them getting ill at some point.

At some time, we have all gone into a room and forgotten what we wanted, or met a friend and temporarily forgotten their name. As we get older, we may become a bit more repetitive or forgetful and the changes you outline in your mother may be nothing more than a consequence of getting on in life. These problems stop being “normal” when the person not only forgets something, but also forgets the context of the memory (for example, they meet a familiar face and forget who the person is, not just forget the name). Also, if the changes you outline in your mother are causing problems with her day-to-day living, or are happening a lot (for example repeating the same thing three times in a day) than that is probably not normal. Confusion and forgetfulness beyond really mild forgetting is usually a sign that something is wrong. If you are worried, the best thing to do is have a chat about your worries with your mother and try to get her to see a doctor. It helps to make a list of the problems you notice, and it possible accompany her so you can let the doctor know your worries. The same really goes for your dad. It may be your parents are just growing old but if you are worried, seek advice.

@madrush

My father in law has vascular dementia and just in process of moving into a nursing home at 86. What should we be considering to smooth the transition as much as possible and to assist him settling in? He thinks he is being sent to prison

In most cases a move into a nursing home can be traumatic for the person as well as the carer. It is important that you validate the concerns of your father in law and give him assurance that it not a prison. It might be helpful to look into his past and understand what he means by ‘prison’ so you can address his hidden meaning, if any. Often prison is related to feeling out of control and having to rely on others for everything.
Plan the move, what will his room be like and what can he take. If possible let him choose the room, make him part of all plans. Make his room as personal as possible; bring his favourite picture etc. so that he has familiar things around him. Arrange a gradual transition by organising visits and overnight stays. Introduce him to similar minded residents; this will reduce the feeling of isolation. Speak to the team looking after him and ensure that he is kept occupied with activities that he enjoys. Allow him to settle in and visit him regularly speaking positively about his wellbeing.

@palmersgate1

I am always reading about changes to diet/ lifestyle that can help prevent dementia (or slow it) but there seems to be a new theory every day. Is there any concrete evidence that what you eat, whether you exercise, not using certain pans, doing mental maths, writing a diary - or any of the other things can make any difference?

As I am sure you know there are various forms of dementia. One of them is vascular dementia.
This is a caused by a disease of the blood vessels taking blood to the brain. It is also thought, however, that there may be a blood vessel/vascular component to Alzheimer's disease though this is probably not the main cause. Clots in blood vessels to the heart give rise to heart attacks. Clots in blood vessels to the brain can lead to strokes. Large or multiple small strokes can lead to dementia. Anything that can reduce the formation of blood clots definitely reduces the risk of heart attacks and strokes. So anything that is good for the heart is likely to be good for the brain.
My advice to you is to keep to a healthy diet, exercise the body regularly, exercise the brain regularly in the ways you have suggested like keeping a diary, doing mental arithmetic and crosswords, not smoking and drinking alcohol in moderation. There is no guarantee that this healthy lifestyle will prevent you from developing dementia but it is good for your general health anyway!

@gibbon160

I'm interested in the prevalence of dementia in women. Please could you explain a little more about why this is the case and whether it is simply linked to the longer life expectancy of women?

Yes, that is the underlying reason.

The prevalence of dementia refers to the proportion of people in a population with dementia at a given point in time. The prevalence of dementia is greater amongst women; in the UK it is estimated that 61% of people with dementia are women (Alzheimer’s Research UK, 2015). Advanced age is the greatest risk factor for dementia (Alzheimer’s Association, 2014). Women have a greater life expectancy than men, therefore a greater number of people with dementia will be women. Taking age into account, there is no evidence to suggest that women are more likely than men to develop dementia at any given age.

A review by Prince et al (2013) suggests that as well as the effects on prevalence due to a higher incidence among older women, it may also partly be explained by differences in survival, as survival with dementia seems to be longer in women than men.
References
Alzheimer’s Association (2014) Alzheimer’s Disease Facts and Figures. Alzheimers and Dementia, 10(2)
Alzheiemer’s Research UK (2015) Women and dementia: A Marginalised Majority www.alzheimersresearchuk.org/wp-content/uploads/2015/03/Women-and-Dementia-A-Marginalised-Majority1.pdf
Prince, M., Bryce, R., Albanese, E., Wimo, A., Ribeiro, W., & Ferri, C. P. (2013). The global prevalence of dementia: A systematic review and metaanalysis. Alzheimer's & Dementia: The Journal Of The Alzheimer's Association, 9(1), 63-75

@glenthebattleostrich

My MIL is currently being investigated for dementia. She's worried about what the tests will involved and also about getting her finances in order. What do the tests involve and how long does diagnosis usually take?

The diagnosis of dementia can be completed on the day or may take a couple of visits, depending on the service your mother-in-law is under and how obvious the diagnosis is. The diagnosis is based mainly on a doctor taking a full account of your mother-in-law’s problems, ideally from her and a relative like you. In addition the doctor will want to do some tests of brain function such as memory, concentration, recognition and language. These can usually be done in a simple questionnaire, which takes 10-15 minutes, but some people need more elaborate tests, which may last an hour or two. There could also be an assessment of day-to-day activities (such as cooking or dressing), ideally by an occupational therapist. Some, but by no means all patients also have a brain scan, which can take a few minutes or up to 40 minutes depending on the type of scan.

If she is worried about her finances she should consider setting up a lasting power of attorney for property and finance; this allows your mother-in-law to appoint someone she trusts to look after her finances when she is no longer able to.
When planning for future care costs, it is advisable to see a financial planner, preferably a member of SOLLA, the society of later life advisers.

@funnyperson

My mother has word finding difficulties and has also begun to see a family of people who dont exist. The optician says her eyesight with glasses is normal but she says she cant see to read. Would speech therapy be helpful or a psychiatrist? How do we and she cope with our feelings?

Having difficulty finding the right words and seeing people who don’t exist may be a sign that something is wrong. There are a number of possibilities here; something as simple as an infection (for example cystitis or chest infection) or a change in your mother’s medication may cause this. However, these symptoms may also occur in other conditions such as dementia. Before seeing a speech therapist it would be worth having an assessment by a doctor experienced in diagnosing dementia such as an old age psychiatrist or a geriatrician. You should be able to access memory assessment services through your local NHS service or through Red & Yellow care www.redandyellowcare.com.

@Acrean1

My father died from Alzheimer?s Disease three years ago, and my mother cared for him until the final year of his life, where we moved him into a care home because he needed round-the-clock care. The stress of looking after my father definitely took it's toll on my mother, and three years on, her closest friends have expressed their concerns of my mother's mental wellbeing. Is there any evidence to show that the primary care-givers of people with Alzheimer's are more likely to develop the disease themselves? I've heard it mentioned several times. Thanks

There is limited research about the risk of someone caring for a person with Alzheimer ?s disease developing Alzheimer?s themselves, and only one study has been published which addresses this . A study in the US by Norton et al. (2010) showed that spouses whose partner developed dementia were at increased risk of developing dementia themselves. Husbands had higher risks than wives. Possible factors contributing to this included shared environmental risk factors, and the physiological and psychological impact of caring for a spouse. The study has a number of limitations, and more research needs to be carried out to investigate this further (Fonareva & Oken, 2014; Gilden et al., 2014). In other words, it?s possible but not proven.

We do know that if you are caring full-time for a person living with dementia that it can be very rewarding but it can also be very stressful. Often people will become neglectful of their own health when they are absorbed in caring for others. We need to look after ourselves if we are caring and we also need to offer support to those undertaking a caring role.

References
Fonareva, I., & Oken, B. S. (2014). Physiological and functional consequences of caregiving for relatives with dementia. International Psychogeriatrics, 26(05), 725-747.
Gilden, D. M., Kubisiak, J. M., Kahle-Wrobleski, K., Ball, D. E., & Bowman, L. (2014). Using US medicare records to evaluate the indirect health effects on spouses: a case study in Alzheimer's disease patients. BMC health services research, 14(1), 291.
Norton, M. C., Smith, K. R., Østbye, T., Tschanz, J. T., Corcoran, C., Schwartz, S., & ... Welsh-Bohmer, K. A. (2010). Greater risk of dementia when spouse has dementia? The Cache County Study. Journal Of The American Geriatrics Society, 58(5), 895-900.