Medical advances are a mixed blessing: fatal diseases of the past have either disappeared in our advanced society – children, for example, don’t suffer and die of diphtheria or polio anymore – and many cancers can be cured if caught early enough.
People who would have previously been brought down by a myriad of serious illnesses now live a normal life and enjoy a longer lifespan.
Some diseases however, mainly strike the elderly and are not curable. Alzheimer’s and other forms of dementia are perhaps the most cruel, as they not only affect the person physically, but also slowly affect their personalities.
This, say both their doctors and family members, is the most difficult part of the disease to both treat and live with.
Two major initiatives have been launched in the past week to help the family carers and friends of people with dementia and Alzheimer’s Disease, the Genio pilot project (see genio.ie) to try and keep people with dementia living at home and in the community and a new on-line resource (see mypeaceofmind.ie) to help carers of people with Alzheimer’s.
I’ve had a very small part to play in the mypeaceofmind.ie campaign, regarding the financial issues at stake when someone you love is diagnosed with Alzheimer’s and there is what I hope will be some useful and practical information about the steps you should take to deal with and protect the financial interests of the affected person.
(This is in addition to medical and social topics that the website addresses.)
About 44,000 older people are living with Alzheimer’s in Ireland today and their circle of carers, families and friends widens that to many hundreds of thousands of us who know someone who is experiencing the day-to-day experience of the disease.
This number is expected to treble over the next 30 years.
In my own family, it was my mother-in-law who developed the disease, very slowly at first with us making all the usual excuses for her lapse of short-term memory (she was well into her 70s), and her tendency to repeat herself, which she herself often noticed and laughed about.
By the end of the first year of those lapses, and after a few incidents in which she forgot to turn off pans on the stove, or to take her pills and especially when her bridge game deteriorated, which was raised by her playing partner, the appointment with a gerontologist was made and he was very certain that she had early onset Alzheimer’s.
Drug treatments were very effective for the first 12 months, but her condition deteriorated and home assistance was arranged.
Eventually, she entered a designated Alzheimer’s nursing home in Dublin where she received the best of care and lived for nearly five years.
Fortunately, an enduring power of attorney was drawn up soon after her diagnosis when my mother-in-law was able to fully understand the purpose of this legal document in which she approved of the terms, which included two of her sons having power of attorney over not just her financial dealings when the time came but she was also able to express her own desires regarding her long-term care when she was no longer able to make those decisions herself.
Her main desire was to stay at home for as long as possible and, when the time came, to enter a nursing home as close to her neighbourhood as possible – which is exactly what happened, making it much easier for everyone to visit.
Once the enduring power was invoked, there was considerable relief, both for her and for her sons, who were able to easily arrange all the payments for her care.
Her house had to be sold to pay for the nursing care, something that would not have been easy with it: she would have been made a ward of the court, with all the bureaucracy and delay that can happen when no legal provision is made.
The financial burden of caring for a family member with Alzheimer’s can be huge if they do not have sufficient resources to hire additional home help (in addition to any allocation of hours that they may receive from the HSE) or to pay for full-time residential care. Depending upon the nursing home, the cost can vary from as much as €50,000 to €60,000 per annum.
The Fair Deal scheme – see http://www.hse.ie/eng/services/Find_a_Service/Older_People_Services/nhss/ – has been under review by the Department of Health, but the concern is that there is insufficient money to meet the demand already, let alone in the future, as the numbers of people needing care rises.
Falling property values mean that the family home may not meet on-going long-term costs or to allow adult children to raise loans from their own properties to supplement a parent’s resources, especially if the bank is not satisfied that this money will be “repaid” by an inheritance.
The survey that was done as part of the mypeaceofmind.ie campaign, in association with the Danish pharmaceutical company Lundbeck (Ireland), revealed that 57% of (6000) respondents said that their loved one’s illness had affected the financial stability of their family.
Thirty-four percent said that the financial burden was the main reason participants hadn’t considered putting their loved one into a home, while a startling 75% of respondents said that their loved one never created an enduring power of attorney.
Overall, 75% of respondents found that caring for a relative with this disease caused considerable strain to family relationships
There is enough sadness and stress already when someone you love develops Alzheimer’s. A bit of planning – ideally with the help of a trusted legal or financial adviser – can at least help ease some of the financial burden.