Introduction

If you are in your forties or fifties, there is a good chance that one or both of your parents could suffer from dementia. We are seeing more and more of our clients ask us about helping them manage the finances of their parents especially when one of them is facing a dementia diagnosis.

In this article, we look at some of the factors that you might want to take into account if you have a parent with dementia. This is based partly on personal experience and the experience of friends, peers as well as clients and should not be construed as specific financial advice but rather a guide to some of the issues you might encounter or you may have already experienced.

Not surprisingly, the focus is typically on finances and navigating the health and social care system but there is a huge emotional burden on those affected by dementia and we wanted to highlight these issues as well.

Dementia – The Extent of The Problem

According to the Alzheimer’s Society, dementia was the leading cause of death for the ten period ending in 2021. Currently, about 982,000 people in the UK have dementia and this is likely to rise to an estimated 1.4 million by 2040 as people continue to live longer. The cost of dementia in the UK is forecast to be £42 billion in 2024 and this is likely to increase to £90 billion by 2040 and this is based on the cost of care, both formal and informal.

The NHS

Unlike conditions such as heart disease or cancer, treatment for dementia is not fully funded by the NHS which can still come as a shock to many older people. When the NHS was set up in 1948, a leaflet that was published at the time stated,

“Everyone – rich or poor, man, woman or child – can use it or any part of it. There are no charges, except for a few items. There are no insurance qualification. But it is not a ‘charity’. You are all paying for it, mainly as tax payers, and it will relieve your money worries in time of illness.”

Successive governments have tried to address this anomaly, for example, the previous Conservative government had looked to introduce a Care Cap of £86,000 from 2025 albeit this was heavily caveated. The new Labour government have decided not to take this forward and their manifesto was particularly light in this area with only a brief mention of a potential National Care Service.

The Emotional Roller Coaster

It is important to remember that everyone dealing with a parent with dementia will have a different set of experiences especially when dealing with third parties such as medical professionals and care providers.

One thing that is often not talked about is the emotional side of things and this can be influenced by a range of factors, for example:

The parent with dementia – mums or dads may not want to admit they need help and will try to be stubbornly independent for as long as they can which can cause tension with those trying to help.
Your relationship with your parent – it may be difficult to discuss issues such as dementia and care needs with a parent.
Siblings – tensions often arise between siblings as there can be assumptions as to who will bear the burden of care:
- The sibling who lives closer to the parent?
- The sister rather than the brother because there is an expectation that women are better at offering care and support than men?
- The sibling who is more organised?
- The sibling who is better off financially?
- The sibling who has the bigger house and it is assumed will be happy to have their parent come live with them.
What’s going on at work. If you are a busy professional working long hours can you take a few hours off to accompany your parent to a GP’s appointment or be there for a care needs assessment or be able to drop everything when there is an emergency.
Your family situation. If you have children who need your support, for example teenagers going through exams, do you have the emotional bandwidth to also support a parent who needs additional care?
Do you have a supportive spouse or partner that you can talk through the issues with?

It is not easy and the stress can become enormous and it is important to build in some self-care where possible and ask for support when it is needed.

The Diagnosis

If you have a parent that you suspect may have dementia, in some cases getting that diagnosis can be relatively difficult. You may have noticed something not quite right with mum or dad but they might not think that anything is wrong. Getting them to see a GP to discuss matters can be incredibly difficult.

Getting a GP’s appointment and then a referral to an adult mental health specialist can also be challenging. In my own experience and those of several others I have spoken to, the referral to the adult mental health team or memory clinic occurs following a particular event, for example, a parent wonders off from the house and goes ‘missing’ and is found lost and distressed or they leave a bath running and there’s a small flood.

The period between noticing that something is wrong and being diagnosed with dementia can take a couple of years.

Lasting Power of Attorney

If your parents don’t have a Lasting Power of Attorney, it is incredibly important that these documents are drafted before they lose mental capacity and registered with the Office of the Public Guardian.

A lasting power of attorney (LPA) is a legal document that lets your parent (the "donor") appoint another person (the "attorney") to make decisions on their behalf if they lose the ability to do so themselves. There are two types: one for making financial decisions and another for making health and care decisions. You can set up LPAs for both types of decisions.

What Happens After The Diagnosis?

Once you have a diagnosis, a number of things can then occur.

Care Needs Assessment

You may be offered a Care Needs Assessment from the adult social services department of your local council or you can ask that one be carried out. Someone from the council, such as a social worker or occupational therapist will ask questions about how your parent is managing everyday tasks like washing, dressing and cooking.

They will then recommend what type of care and support your parent might need and this is likely to include things such as a paid carer to come in or for meals to be delivered to the home.

Homecare Providers

Initially, you might be looking at arranging support and care so that your parent can remain in their home which will involve contacting a number of homecare providers.

Typically, this may involve a care worker coming in one, two or three times a day and will help with washing, dressing, preparing a meal and taking medication. The homecare provider will arrange for an assessment to be carried out and will then put in place a care plan.

You may have to consider installing a key-safe so that the care workers can let themselves in and you may also want to consider installing a device which notifies a third-party should your parent take a fall or decide to leave the house.

The cost of home care can vary and a typical cost is in the region of £25 per hour. Most people who have arranged home care (and myself included) have said that most care workers are really good but they are under enormous pressure to visit lots of clients which means that they may not stay for the full hour once travel is taken into account. Also, the average pay for a care worker is a little under £12.00 per hour.

It is possible to enter into a private arrangement with a care worker and pay a higher hourly rate for a more personalised service.

Finances

We are often asked to review a parent’s finances at this stage especially when it is clear that any support or care package is going to be fully funded. Typically, we will review income and expenditure and then look at any assets.

There are some important considerations at this point especially if you are also an attorney under the Power of Attorney.

Where the Lasting Power of Attorney is in operation you must act in the best interests of the donor which means that you are unable to make gifts to other people unless it is for relatively small gifts at customary occasions such as birthdays, weddings or other significant events.

Given the emotional toll caring for a parent with dementia can have, both for you and your parent, you might want to consider factoring in some respite care. This could take the form of a week or two weeks and provides you both with a break.

Also, if your parent does need to go into a care home, it can be a good way of introducing them to the home or provide you with an opportunity to see the different types of care homes available.

Attendance Allowance

It does not matter how much income or savings your parents have, Attendance Allowance is available to anyone over the State Pension Age who has a disability severe enough that they need someone to help look after them. The only caveat is that they must have needed help for at least six months.

It is surprising how many people don’t apply for this benefit wrongly assuming that it is means tested.

Cost of a Care Home

Generally speaking, your parent will not be entitled to help with the cost of care from their local council if:

They have savings worth more than £23,250 (known as the Upper Capital Limit).
They own their own property.

If you don’t think that your parent will be a ‘self-funder’, the local council will carry out a financial assessment to determine how much your parent may need to contribute towards the cost of their care.

If you are looking for a care home, the website, Lottie.org is a useful resource for searching for care homes in a particular location and for finding those who are able to accommodate residents with dementia.

The cost of a care home can vary depending on location and the needs of the resident. Somewhere in the region of £1,400 - £1,600 per week is fairly typical which amounts to between £72,800 and £83,200 per annum.

NHS Continuing Healthcare

A diagnosis of dementia is not an automatic entitlement to NHS Continuing Healthcare as it is the person’s health needs, not their diagnosis, which determines eligibility.

As such, many people with dementia will not meet the criteria and so won’t be eligible.

Some people may qualify for NHS Continuing Healthcare if their condition worsens and their need for care qualifies as a ‘primary health need’.

You may want to take specialist advice in this area especially if you feel that your parent’s symptoms have worsened such that they may be eligible for funding even if they have been refused in the past.

Also, you may want to seek specialist advice if NHS Continuing Healthcare has been removed, for example, if your parent has become too ill to display the behaviours that previously qualified them for funding.

NHS-funded Nursing Care

If your parent is not eligible for NHS Continuing Healthcare but has been assessed as needing care from a registered nurse or they live in a nursing home, your parent will be entitled to NHS-funded Nursing Care.

This is a fixed payment and is paid directly to the care home.

Deprivation of Assets and Gifting of Property into Trust

I thought I would mention deprivation of assets as sometimes a parent might decide they want to give money or property away so that it is not taken into account should they need to go into a care home.

When carrying out a financial assessment, the local council will check to see whether someone has given assets away knowing that they would need care at some point in the future.

Some people, when they are in good health, decide that it might be a good idea to give away their property into Trust so that it can be passed on to the children as an inheritance. This strategy comes with a huge amount of risk as the local council could decide to pursue that person if they suspect it was done to avoid care fees.

Also, they will need to appoint trustees to manage the trust for the benefit of the beneficiaries which can be complex and setting up a trust can be relatively expensive and come with unexpected tax implications.

I would always be wary of taking this approach as it can put the children in a very difficult position if the parent did need to go into a care home. The difference between a good, well run care home and a less well run care home can be enormous and most children, I suspect, would want to provide their parent with the best nursing care possible for the rest of their lives.

Inheritance

The issue of inheritance can cause a degree of tension especially if a sibling was expecting to receive an inheritance. Where care is being fully funded for the last surviving parent, it is often the case that the parental home will be sold to pay for the care. Whereas before the dementia diagnosis there was an expectation that, on death, the family home would pass to the children, it may be the case that only a minimal inheritance will be paid.

Preventing Dementia

Seeing first-hand the effects of dementia on a loved one typically leads to people asking the question – how can I avoid suffering from dementia.

In research published in the journal, The Lancet, there are 14 risk factors which, if addressed, could prevent or delay the onset of dementia. These are:

Bad cholesterol in mid-life from about age 40.
Untreated vision loss in later life.
Lower levels of education.
Hearing impairment.
High blood pressure.
Smoking.
Obesity.
Depression.
Physical inactivity.
Diabetes.
Excessive alcohol consumption.
Traumatic brain injury.
Air pollution.
Social isolation.

For those concerned about the risk of dementia, knowing these risk factors can help them make small lifestyle changes now that, hopefully, will prevent them from receiving a dementia diagnosis in the future.

Conclusion

Dementia is a terrible disease and its impact can be felt, not only by the person affected, but their close family and friends.

It is important that, if you have a parent with dementia, you not only consider the financial impact but also the emotional toll that it can bring.

Elderly Parents and Dementia