12 Dementia - Early Decisions, Documents and Action for End of Life

Although some of us will become vulnerable in some way, the matters listed below probably apply to any of us, fit or otherwise. They are for many very difficult matters to even contemplate. They are listed here as being important for those with memory problems or dementia.  Probably not exhaustive, they include:

• Will
• Lasting Power of Attorney for a) property and finance, and  b) health and care 
• Preferred place for any end of life treatment and care
• Decisions for refusal of treatment
• Funeral arrangements 
• Donations of organs and pacemaker, etc
• Family records and history for future generations
• Messages for family members and friends 
• Decisions about distribution of sentimental items
• Declutting of papers, records and chattels
• Trusts and other arrangements for vulnerable members of the family.

Relared posts include Post 12A.

17 Lasting Powers of Attorney and Dementia, etc [Update 2 - 20/11/13]

This Post identifies documents where an individual has expressed wishes about a) medical treatment, c) preferred final place for care, d) welfare, e) finance, f) property, e) provision for family members and others following death.

An individual with early onset dementia might need to consider having:

•  a Will
• two kinds of Lasting Powers of Attorney these might cover 1) finance and property and  2) clinical and welfare, including long term care
• an Advance Decision to Refuse Treatment. 

All the above mentioned will be need to be made whilst the person with dementia has mental capacity to make decisions. They will be important for the patient's GP, hospital doctors and nurses, care home staff and other professionals wishing to take cognisance of the patient's wishes, eg a)  for their treatment, b) where they want to be, and c) their care. You may like to note that, of course, the documents are formal and have nuances of law which affect the way they come into effect.

As an illustration, Swale Clinical Commissioning Group (CCG) in Kent is developing an integrated end of life health and care pathway for those who have a few months to live, say upto 12 months. For those with dementia the period may be longer. The CCG's approach is to provide all professional's in the integrated care pathway to have on-line access to:

• the patient's wishes as expressed in the legal documents, namely, the lastings power of attorney concerning health and care
• the planned pathway for integrated care 
• the ongoing clinical and care records as kept by the professionals on a daily basis.

It is conceivable that where a person living with dementia wishes to remain at home, this will be more readily acheived.

Related posts include: Post 12

12.1 Some Legal Points on Housing and other Care Settings for Seniors with Dementia

When seeking accommodation, seniors with dementia have many of the concerns which other seniors have, but also have other needs particular to their circumstances. As a person's life with a diagnosis of dementia starts it may not be very different that that of the others. In fact the former may already be addressing the concerns touched on above. These are likely to include:

• the prospect of downsizing from a much loved home
• the types of accommodation needed: bungalow, flat, serviced accommodation, care home, rest home, accommodation in a family member's home, etc   
• the practical tasks faced in getting ready for such a move, namely: a) emptying the loft, b) reducing the quantum of furniture, and which items to discard,  c) identifying the criteria for the search for suitable alternative accommodation eg location, size, facilities, services, etc 
• the need to seek professional and other advice and services in respect of the last items.

Where a person has been diagnosed with dementia, it is a similar set of concerns but is likely to be laden with the following:

• having need to make decisions, so depending on how far along the dementia jouney an individual has reached he or she may find questions about mental capacity to act on certain decisions
• this leads to pointers as to whether there exists any valid legal documents, such as: a) a Will, b) a Lasting Powers of Attorney concerning property and finance, c) a Lasting Powers of Attorney concerning health, care and wellbeing
• if at a late stage of dementia, perhaps following a crisis, it is found that none of these exist or for some reason they are invalid. Here, if mental capacity is lacking, it may be necesssary for a family member, friend or professional to seek an order of the Court of Protection (UK). 
• Finally, an important point is that the wishes which might have been held earlier may not be known by the health and care team in assessing suitable treatment.
• Where valid legal documents are available the wishes of the individual must normally be observed  by those handling property and finance, but perhaps more importantly, prosessional medical and care staff are required to see that the wishes of the patient are addressed appropriately in accord with wishes as to treatment. Similarly, on death the deceased estate passes under the rules of intestacy unless there is a valid Will (see Post 12). 

12A Dementia and the Need for a Will and Other Documents [Update 10 - 22.12.13]

A person with dementia in the end of life (EOL) phase should be receiving appropriate care, in an appropriate place, and in accord with his or her wishes. Hopefully, he or she would have made arrangements to be in place so as to cover important decisions about their care, place, and their finances and property. If the individual is young the decisions may affect a young spouse or partner and any children. The decisions can only be known and acted upon in law by the family, carer, doctors, health and care workers if there is a Will, and powers of attorney, etc covering property, finances and, in particular, health and welfare (care) matters.

The above and other pre-EOL matters which might be listed. [see Post 12B]. They include:

• Will
• Lasting power of attorney for a) property and finance, and  b) health and care 
• Decisions on refusal of treatment
• Funeral arrangements 
• Donations of organs and pacemaker, etc
• Family records and history for future generations
• Messages for family members and friends 
• Decisions about distribution of sentimental items
• Declutting of papers, records and chattels
• Trusts and other arrangements for vulnerable members of the family, eg children, vulnerable adults.

A lawyer who specialises in family law, estate planning and the like might be expected to give advice on the likes of the following documents:

• Will
• Lasting powers of attorney for financial and property affairs (see a later Post)
• Lasting powers of attorney for health and welfare (see a later Post)
•  

Will

It is surprising how many individuals do not have a Will (or "mirror" Wills in the case of a couple). 

A Will is a formal legal document which states the wishes of an individual (testator) as to the likes of the following:

• distribution of his or her estate after death 
• provisions for a spouse or partner and any children 
• gifts to other persons, etc. 

Formal Preparation of a Will

When preparing a Will certain formal conditions are required by law, including

• the testator must have mental capacity to make a Will 
• provision for one or more executors who will administer the estate in due course
• a signing of the Will by the testator
• the witnessing of the act of signing by two persons.

A Will is normally prepared by a solicitor or legal executive after an explanation of the testator's intentions - where necessary, with guidance on how the law affects the intentions. 

Absence of a Will 

Unless an individual has made a Will his or her intentions for his or her estate would most probablty not be met.   This is likely in the following kinds of circumstances:

• no Will was made 
• the Will is void as a result of re-marriage taking place after it was made
• the testator did not have mental capacity at the time the Will was signed 
• the Will is otherwise invalid, eg it is defective in form, eg not witnessed. 

In any of these circumstances the deceased's Estate will pass under the Rules of Intestacy.

Finally, even if a Will has been made, it may be disputed and contested in law because, for instance, no provision was made for the deceased spouse or children who are minors. Here one or more aggrieved parties may seek a deed of variation.  

Solicitors for the Elderly
Many solicitors may advise or act on these matters but in the 1990s a national body was set up, Solicitors for the Elderley. It authorises individual solicitors, barristers and legal executives requiring of them the following:

• to have a specified number of years of advising seniors
• to pass a qualifying examination on the relevant areas of law
• to comply with the SFE Code of Practice.

More details are available on the following website: http://www.solicitorsfortheelderly.com/

Footnote: This mention of Will Aid - see www.willaid.org.uk/ which, I understand, runs in November every year, and allows individuals or couples to obtain a Will or mirror Wills respectively at relatively low prices.