JUDE BARBACK considers the burdens placed on the older person caring for their spouse or partner and what support is out there for them.
Until death do us part, in sickness and in health – there are great expectations placed on a marriage. For many couples it isn’t until the later stages of life when the ‘sickness’ becomes a reality and one spouse, typically when his or her own health is beginning to ail, assumes the role of ‘carer’ in addition to husband or wife.
Are spousal carers coping with this late-life burden? What are the impacts on their own health and wellbeing? And where do they turn for support if they find themselves unable to cope?
Roy and Betty’s story
In March last year Home Support North Charitable Trust received a district health board (DHB) referral for Roy* who was diagnosed with Parkinson’s disease. Roy was allocated four personal care hours each week for a support worker to provide assistance so that his wife, Betty*, his sole carer, could go to her embroidery class. Carer support hours were also allocated and Betty arranged for a friend to come and be with Roy for twice a week, allowing her to attend a weekly social day at a nearby retirement village for four hours.
By July Roy was now allocated ten hours of personal care assistance in which the support worker provides showering assistance six days a week as well as four hours supervision so that Betty could continue attending her embroidery class. Roy was put on the respite programme and would spend one week in every six residing at the retirement village.
But despite the increase in hours and the respite programme, Betty did not appear to be coping with the strain of being the main carer of a spouse whose health was deteriorating. She came into the office on several occasions and cried on the coordinator’s shoulder. While the family appeared caring, they were not supportive with the day-to-day care of Roy.
By February this year, it all got too much for Betty and Roy was exited from the trust’s service and entered permanent residential care.
“I have found that there is tremendous pressure on the main carer of a spouse who has declining health. Some people appear to cope and others don’t,” says Fiona Barrett of Home Support North Charitable Trust.
Detrimental to health
Betty’s failure to cope with the strain of caring for her husband is not an isolated case. Research consistently shows that the emotional and physical burden on those who care for their spouse or partner can have a detrimental effect on the carer’s health.
The Caregiver Health Effects Study, as published in Preventative Medicine by Burton et al, found that spousal caregivers were significantly more likely than non-caregivers to not get enough rest, to miss meals, to not take enough time to exercise or recuperate from illness, to forget to take prescription medications, and to miss doctor appointments.
A US report conducted by the National Alliance for Caregiving in 2006 found 17 per cent of family caregivers reported their health as fair or poor – compared to the national average of nine per cent. Fifteen per cent of the caregivers surveyed said their health had become “a lot worse” because of providing care, while 44 per cent said it had got “moderately worse”. Common complaints included energy and sleep deprivation, stress and panic attacks, pain, depression, and headaches.
Many of these ailments were also found in research analysis compiled by Michael Fine and Caroline Glendinning in Ageing & Society . For example, the role of dementia in creating needs for care in advanced old age is associated with high levels of stress and depression amongst carers.
However, research shows that it makes little difference what illness or disease is affecting the patient. A study published in the International Journal of Geriatric Psychiatry in 2002 by Thommessen et al looked specifically at spouses caring for patients with dementia, stroke and Parkinson’s disease and concluded that these spousal caregivers perceive a similar type and level of psychosocial burden, independent of the disease, although the cognitive functioning of the patient was found to be a particularly important factor. Disorganization of household routines, difficulties with going away for holidays, restrictions on social life, and the disturbances of sleep were the most frequently reported problems.
The blurred line between ‘carer’ and ‘dependent’
There are two misconceptions around spousal care. The first is that women are always the caregivers in a relationship and men the recipients of care. This, in part is attributed to the longer life expectancy of women and the fact that husbands are often older than their wives. The 1996 Census showed that of the 54 percent of elderly who lived with a spouse or a partner, two-thirds of elderly men and two-fifths of elderly women were living with a spouse/partner. It also stems from traditional notions of women fulfilling caregiver roles.
However, social trends appear to be changing, suggesting that more men provide care for their spouses than previously acknowledged. Fine and Glendinning point out that the growing visibility of older men as carers suggests that gender is no longer the most influential factor in caregiving for a spouse or partner.
The second misconception stems from the generalisation that one person in a couple is the carer and the other is the recipient of care. In most cases, a couple will live in a state of mutual dependence; while this may fluctuate in the case of ill health of one spouse, it doesn’t eliminate the needs of the other spouse. Fine and Glendinning suggest that it is increasingly inappropriate to distinguish a ‘dependent’ older person from a ‘carer’ as it is likely that both will have some needs that need to be met.
Ruth, a resident at Bupa’s Glenburn Retirement Village in Auckland, and her husband in the aged care facility next door, provide an example of mutual dependency. Ruth was the sole carer for her husband – who has dementia – before he entered permanent residential care, but as she has a sight and hearing impairment, she still depends on her husband to help her with various tasks.
Home support services
Spouses need not shoulder the burden of caring for their partner all by themselves. Home support is a way of providing a break for them, or for helping with the more daunting personal care tasks.
Often the system works well to support spouses. Bridget Smith from Access Homehealth says they take a proactive approach to supporting the spouse or partner, devising a plan in preparation that recognises that if the client needs to goes into hospital, the spouse may still require some support at home, with heavy household tasks, for example.
However it transpires that tightening up of the funding rules around home support services has meant home support providers now have to charge clients a ‘top up’ fee for each hour of carer support used, the cost creating a barrier for many spouses in seeking home support.
“The big area where there is a major problem is using their carer support hours,” says Jennifer Jones from Access. “Often we found people would use this to give them a morning out of the house. Because of the dollar value placed on the carer support we may do four hours and claim one day (eight hours) of carer support which the client was very happy about. When the Ministry of Health stopped this and said we had to charge only the hours we were there it meant the carer was paying a big top up for each hour of carer support they used. This has meant many people now do not use the carer support hours as it is financially too hard.”
Financial support for family carers has been a sensitive topic in recent years.
The Government’s highly criticised Funded Family Care policy came into play on 1 October last year. Under the new policy, eligible adult disabled people are allocated Ministry of Health funding to employ certain family carers for the delivery of personal care and household management services. The funding, estimated at $23 million a year over the next four years, will enable around 1600 parents of disabled adults who have high-support needs to receive the minimum wage for up to 40 hours per week.
However, the scheme does not extend to children, spouses or partners, and neither spouses nor partners of older people qualify for the Supported Living Payment (which replaced the Domestic Purposes Benefit – Caring for the Sick or Infirm last year), for which other at-home family carers who give up an income are eligible.
So what financial support is available for those caring for their elderly spouse? In these circumstances, the supported person and their partner may qualify for a benefit in their own right, including the Invalid’s Benefit or New Zealand Superannuation, and the carer can receive financial support as a partner.
New Zealand Superannuation provides regular income for older people, but there is extra targeted financial support for those in need, such as the accommodation supplement, disability allowance, and hardship assistance, in the form of Special Needs Grants and Advance Payment of New Zealand Superannuation, for people who have immediate or emergency need and have no other way of meeting that need. In 2012, hardship assistance totalling $12.6 million was paid to people aged over 65.
Problems with respite care
Of course for many, it is not about the money, but about the available support.
It appears there is need for more and better respite options. NZ Doctor’s 2010 “Report into Aged Care” revealed several examples when the quality of respite care was reportedly inadequate. In one submission, a daughter maintained that “everything that went wrong with her [mother] was done in the rest home respite care” where she went once a week for 24 hours. Another submitter told of her husband being cared for by “several teenagers” who bullied the residents to hurry up getting their meals or they would be taken away from them.
Garry Bell, general manager of Waiheke Health Trust says respite is an ongoing issue for his organisation as there is no in-patient facility to provide this service.
“The loss of a rest home in our area has really impacted on options in this area,” says Bell, “It is very difficult finding a place in the city and getting the person there even if they do find somewhere they like. There is funding for some in-home respite available if the person meets the criteria, however it is sometimes required at very short notice [such as] times of extreme carer stress or the full-time caregiver becoming ill, and in those cases it can be difficult to get funding quickly.”
Bridget Smith from Access agrees.
“Most respite from a two week point of view is really difficult for clients as they have to pre-book the respite, yet they more likely need to have respite up sleeve in case anything happens – like sickness – but then they often can’t use it as they have to pre-book.
“We also often find that respite hasn’t been put into a care package either and only becomes an issue once there is a care package in place or if a client is already assessed as rest home or hospital level.”
Smith thinks more funded day care – or night care if the person wanders at night – should be accessible to families, in order to give the spouse a break.
“Often the spouse is requiring some relief just to be able to have a sleep in, go shopping, catch up with family or get out of the house without relying on others. For the client, day care provides activities, social engagement, and some provide a clinical review.”
Carers’ Strategy Action Plan
Despite the limitations and inadequacies of respite care in its current form, it remains an important factor for family.
The recent announcement of the Carers’ Strategy Action Plan for 2014 to 2018 by Senior Citizens Minister Jo Goodhew suggests the Government is aware of the need for some improvement to respite services.
The plan, which Goodhew promises does not take a “one size fits all” approach, is the result of extensive consultation last year, including the consideration of over 400 written submissions.
Among other things, the plan recognises that carers need support to balance their caring with their work and studies. It also acknowledges “a top priority for carers is being able to take a break when required”.
The plan details the intention to develop a carers’ resource on respite, and to develop a range of respite options, through trialling different types of respite options – not just facility-based care. It also outlines the development of an online carer matching service.
The proposed online service will hold a database of key carer criteria that the family carer may search to select the most suitable alternative carer or option available in “real time” to support the person they care for when the family carer needs a break.
‘Arduous’ assessment processes
Another area of concern is the assessment process to determine the need for the client to receive some home support in addition to the care delivered by the spouse.
Garry Bell of Waiheke Health Trust says feedback to his team from most people in this particular situation is that the assessment process is arduous, with the assessment taking between two to three hours.
“We have not had any positive feedback re the interRAI experience to date, however regrettably plenty of negative comments. Often the spouse that is looking after a partner with a high level of need finds the assessment exhausting and finds some of the questions too personal.”
However, not everyone shares this view. Carmel Conaghan, general manager of Home and Community Support Services at Geneva Healthcare concedes that some may find the interRAI process long-winded, but believes the assessment tool will prove to be hugely beneficial to the sector.
“The beauty of interRAI is that it is used on a global platform and we will start to form a picture of where there are pockets of carer stress and where there aren’t, for example, and learn from these areas.”
Another criticism of assessment processes is that clients can feel like they are answering the same questions over and over again for different organisations. Conaghan says interRAI will eventually replace the need for so many people to come in and essentially do the same assessment.
Restorative model of care
Conaghan is an advocate for the restorative model of care, which was championed by the Auckland District Health Board and is now being adopted by an increasing number of DHBs around the country and providers.
The restorative model is essentially about providing assessments of clients in the community and responding to the person’s individual needs. The assessment takes into account their home environment and the needs of their spouse or partner in order to devise a practical programme of support that aims to build functional ability where possible, reinforce independence and limit the impact of ill health and disability.
“It is all about encouraging client independence, about empowering the client,” says Conaghan.
A restorative pathway should take into account the needs of the spouse or partner who is delivering much of the care and support carers to maintain their own health and wellbeing. This could include the provision of home support or flexible respite options that suit the needs of the client and the spouse.
It is common knowledge that person-centred care is the way forward; but in order to truly take into account the needs of a person, the needs of the people closest to that person also have to be considered if it is going to have any chance of success.
*names have been changed.